research.edgehill.ac.uk · Web viewI owe a huge amount of gratitude to my supervisory team of...

A multiple case study to explore the views and experiences of young people, their parents and carers, and healthcare

professionals of the advance care planning process

Ben Hughes

August 2019

A thesis submitted in partial fulfilment of the requirements for the Degree of Doctor of Philosophy

Edge Hill University

DECLARATION

This thesis is entirely my own work and has not been submitted in full or part for the award of a higher degree at any other educational institution. Parts of the PhD have been discussed and presented prior to submission of the thesis and these are detailed below:

Invited oral conference presentation:

Hughes, B., O’Brien, M., Flynn, A. and Knighting, K. (2018) Views and experiences of young people, their parents/carers, and health care professionals of the advance care planning process, “Too Little Too Late”: International research on Paediatric Palliative Care Conference, Brian House Children’s Hospice, Blackpool, UK [September 2018]

Poster conference presentation:

Hughes, B., O’Brien, M., Flynn, A. and Knighting, K. (2018) A multiple case study of the views and experiences of young people, their parents/carers, and healthcare professionals in the advance care planning process, Martin House Research Centre 1st Biennial Research Conference, York, UK [September 2018]

Publication:

Hughes, B., O’Brien, M., Flynn, A. and Knighting, K. (2018) The engagement of young people in their own advance care planning process: a systematic narrative synthesis. Palliative Medicine, pp.1–53.

Patient and Public Involvement:

2017 Attended various professional network meetings: consulted with professionals to assist with the recruitment of participants for the PhD study.

2016 Attended various professional network meetings: consulted with professionals to assist with the design of the PhD study.

Consulted with young people, and parents/carers, to assist with the design of participant information sheets to recruit participants for the PhD study

2015 Attended various professional network meetings: Consulted with professionals to assist with the design of the PhD study.

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ACKNOWLEDGEMENTS

I owe a huge amount of gratitude to my supervisory team of Doctor Katherine Knighting,

Professor Mary O’Brien, and Doctor Anita Flynn, whose insight and opinions have guided me

expertly through to the completion of this study. You have always been there to listen,

advise and be my unwavering support on the winding PhD journey. I am grateful for your

reassurance and encouragement during the last three years, whether at supervision

meetings, in the corridor, or by telephone and emails.

A special thank you goes to my family. My wife, Helen, and my son, Sam, have been an

endless source of support, love, and inspiration in life. You have helped me laugh, motivated

me to work, and always been there when I needed you the most. I also appreciate the love

and encouragement from my wider family, friends, and colleagues, whose tolerance,

conversations, food and drink, and everything in between have helped me reach the end of

this journey.

I am extremely grateful to the young people, parents/carers and healthcare professionals,

who have shared their views to make this study possible. Each personal story will stay with

me forever, and your strength, tenacity, and love are the hidden narratives I hope I have

been able to share in this thesis. Finally, thank you to those people I have also spoken to

along my journey. Whether we have met just once or on a number of occasions, you have

allowed me to talk and share my work. Your interest and patience have been a great source

of encouragement to me.

CONTENTS

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Declaration...............................................................................................................................2

Acknowledgements..................................................................................................................3

Contents...................................................................................................................................4

List of figures............................................................................................................................9

List of tables............................................................................................................................. 9

List of appendices...................................................................................................................10

Abbreviations and terms........................................................................................................11

Abstract..................................................................................................................................12

CHAPTER 1 – INTRODUCTION.................................................................................................14

1.1 Chapter introduction........................................................................................................14

1.2 Research background and focus.......................................................................................14

1.3 Development of advance care planning (ACP) for adults in the UK..................................15

1.4 The Mental Capacity Act (2005).......................................................................................161.4.1 An advance statement of wishes (advance care plan)............................................................16

1.4.2. An advance decision to refuse treatment (ADRT)..................................................................16

1.4.3. Lasting power of attorney (LPA).............................................................................................17

1.5 Liverpool Care Pathway (LCP)...........................................................................................18

1.6 Advance care planning (ACP) documentation..................................................................19

1.7 Research focus................................................................................................................. 201.7.1 Research aim and objectives..................................................................................................20

1.7.2 Research aim..........................................................................................................................21

1.8 Research objectives..........................................................................................................21

1.9 Thesis structure................................................................................................................22

1.10 Chapter summary...........................................................................................................24

CHAPTER 2: BACKGROUND LITERATURE REVIEW – FACTORS THAT FACILITATE OR OBSTRUCT ADVANCE CARE PLANNING FOR YOUNG PEOPLE (ACPfYP)....................................................25


2.2 Literature review question...............................................................................................25

2.3 Search strategy.................................................................................................................262.3.1 Database searches..................................................................................................................26

2.3.2 Database search terms...........................................................................................................27

2.3.3 Selection criteria.....................................................................................................................27

2.4 Overview of the studies....................................................................................................282.4.1 Theme 1: Communication.......................................................................................................30

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2.4.2 Theme 2: Training and support for healthcare professionals (HCPs)......................................34

2.4.3 Theme 3: Allocation of resources...........................................................................................36

2.4.4 Theme 4: How advance care planning for young people (ACPfYP) works in practice.............38

2.4.5 Theme 5: Relationships...........................................................................................................40

2.4.6 Theme 6: Power dynamics......................................................................................................43

2.5 The perspective of existing research................................................................................45

2.6 Chapter summary.............................................................................................................49

CHAPTER 3 – A SYSTEMATIC NARRATIVE REVIEW OF THE ENGAGEMENT OF YOUNG PEOPLE IN THEIR OWN ADVANCE CARE PLAN (ACP)...........................................................................50


3.2 Review question...............................................................................................................50

3.3 Method.............................................................................................................................51

3.4 Search strategy.................................................................................................................523.4.1 Database searches..................................................................................................................52

3.4.2 Database search terms...........................................................................................................52

3.4.3 Selection criteria.....................................................................................................................52

3.5 Data extraction and method of synthesis.........................................................................53

3.6 Assessment of quality.......................................................................................................55

3.7 Overview of the studies....................................................................................................56

3.8 Themes.............................................................................................................................583.8.1 Theme 1 – How advance care planning for young people (ACPfYP) works in practice...........60

3.8.2 Theme 2 – Communication.....................................................................................................62

3.8.3 Theme 3 – Training and education of healthcare professionals (HCPs)..................................65

3.8.4 Theme 4 – Relationships.........................................................................................................67

3.5 Overview of the studies....................................................................................................69

3.6 Limitations........................................................................................................................72

3.7 Strengths.......................................................................................................................... 74

3.8 The significance of the findings........................................................................................75

3.9 Chapter summary.............................................................................................................76

CHAPTER 4 – METHODOLOGY................................................................................................77


4.2 Research Design...............................................................................................................77

4.3 Research focus................................................................................................................. 78

4.4 Ontology and epistemology.............................................................................................78

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4.4.1 Ontology................................................................................................................................79

4.4.2 Epistemology..........................................................................................................................82

4.5 Methodological approaches.............................................................................................84

4.6 Methodological Approaches considered..........................................................................874.6.1 Case study methodology........................................................................................................88

4.7 Rationale for the adoption of case study methodology...................................................89

4.8 Strengths and limitations of case study methodology.....................................................92

4.9 Researcher position..........................................................................................................92

4.10 Unit of analysis...............................................................................................................94

4.11 Chapter summary...........................................................................................................95

CHAPTER 5 – METHOD...........................................................................................................96


5.2 Research aim, question and objectives............................................................................96

5.3 Research design................................................................................................................975.3.1 Defining the case....................................................................................................................97

5.3.2 Sampling.................................................................................................................................98

5.3.2.1 Inclusion and exclusion criteria: Young people and their parents/carers...........................99

5.3.2 Recruitment..........................................................................................................................102

5.3.3 Data Collection.....................................................................................................................107

5.4 Stage One: Data collection with young people and their parents/carers.......................1115.4.1 Interviews with young people..............................................................................................111

5.4.2 Interviews with Parents and Carers......................................................................................114

5.5 Stage Two: Data collection with Healthcare professionals.............................................115

5.6 Data Saturation.............................................................................................................. 117

5.7 Data Analysis..................................................................................................................1175.7.1 Data sources.........................................................................................................................117

5.8 Data preparation............................................................................................................118

5.9 Approaches considered for data analysis.......................................................................1185.9.1 Analytical approaches considered........................................................................................119

5.9.2 Rationale for using thematic analysis and discourse analysis...............................................121

5.10 Process of data analysis................................................................................................1245.10.1 Process of thematic analysis...............................................................................................124

5.10.2 Process of critical discourse analysis...................................................................................125

5.11 Data Management........................................................................................................127

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5.12 Rigour in the research process.....................................................................................127

5.13 Ethical considerations...................................................................................................1285.13.1 Confidentiality and anonymity............................................................................................129

5.13.2 Protecting participants from harm.....................................................................................129

5.13.3 Protecting researchers from harm......................................................................................132

5.13.4 Data management and storage..........................................................................................132

5.13.5 Research Ethics committee approvals................................................................................133

5.14 Chapter summary.........................................................................................................134

CHAPTER 6 – FINDINGS: THEMATIC ANALYSIS.....................................................................136

6.1 Chapter introduction......................................................................................................136

6.2 Participants.....................................................................................................................136

6.3 The cases........................................................................................................................1376.3.1 Andrew’s case study.............................................................................................................138

6.3.2 Bartholomew’s case study....................................................................................................139

6.3.3 Peter’s case study.................................................................................................................141

6.3.4 Miriam’s case study..............................................................................................................143

6.4 Findings.......................................................................................................................... 1456.4.1 Theme 1: Understanding of ACP...........................................................................................147

6.4.2 Theme 2: Advance care planning for young people (ACPfYP) in practice.............................153

6.4.3 Theme 3: Communication.....................................................................................................183

6.4.4 Theme 4: Education and training for healthcare professionals (HCPs).................................191

6.4.5 Theme 5: Relationships.........................................................................................................197

6.4.6 Theme 6: Organisational structure and culture....................................................................204

6.4.7 Theme 7: Involving young people in their own advance care plan (ACP).............................212

6.5 Chapter summary...........................................................................................................222

CHAPTER 7 – FINDINGS: CRITICAL DISCOURSE ANALYSIS.....................................................226


7.2 Rationale for adopting critical discourse analysis (CDA).................................................227

7.3 Communication and the use of language.......................................................................2287.3.1 Theme 1: Perceived use of a medical discourse and power on knowledge and understanding in advance care planning for young people (ACPfYP) discussions and documentation.................228

7.3.2 Theme 2: Use of self-monitoring communication and power within advance care planning for young people (ACPfYP)..................................................................................................................240

7.4 Chapter Summary...........................................................................................................253

CHAPTER 8 - DISCUSSION.....................................................................................................256

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8.2 Theme 1: Understanding of advance care planning for young people (ACPfYP)............256

8.3 Theme 2: Advance care planning for young people (ACPfYP) in practice.......................261

8.4 Theme 3: Communication..............................................................................................267

8.5 Theme 4: Education and training...................................................................................270

8.6 Theme 5: Relationships..................................................................................................274

8.7 Theme 6: Organisational structure and culture..............................................................278

8.8 Synthesis of findings.......................................................................................................2828.8.1 Misperception of terms........................................................................................................282

8.8.2 Hierarchies of power in relationships...................................................................................285

8.8.3 Flexible and innovative organisational structures and cultures............................................290

8.8.4 Summary of synthesis...........................................................................................................292

8.9 Chapter summary...........................................................................................................293

CHAPTER 9 – REFLECTIVE CHAPTER......................................................................................295


9.2 Situating the researcher.................................................................................................296

9.3 Reflection on the study process.....................................................................................2979.3.1 Recruitment of participants..................................................................................................297

9.3.2 Data collection......................................................................................................................299

9.4 Reflection on the impact of the study on personal development..................................303

9.5 Chapter summary...........................................................................................................305

CHAPTER 10 – CONCLUSION AND RECOMMENDATIONS.....................................................307

10.1 Chapter introduction....................................................................................................307

10.2 Research contribution to advance care planning for young people (ACPfYP)..............307

10.3 Recommendations for policy and practice...................................................................31010.3.1 Recommendations for policy..............................................................................................310

10.3.2 Recommendations for practice...........................................................................................311

10.4 Recommendations for further research.......................................................................313

10.5 Unique and significant contribution to Methodology and knowledge.........................31410.5.1 Unique and significant contributions to methodology.......................................................314

10.5.2 Unique and significant contributions to knowledge...........................................................315

10.6 Strengths and limitations of the study.........................................................................317

10.7 Research dissemination................................................................................................32010.7.1 Publication to aid dissemination of findings.......................................................................323

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10.8 Chapter summary.........................................................................................................323

REFERENCES.........................................................................................................................325

LIST OF FIGURES

Figure 1 – Advance care planning (ACP) in context................................................................18

Figure 2 – Summary of the literature search..........................................................................30

Figure 3 – PRISMA flow diagram............................................................................................55

Figure 4 – Summary of the recruitment and data collection process for Stages One and Two

............................................................................................................................................. 116

Figure 5 – The recruitment phase of the study....................................................................137

Figure 6 – Summary of participants interviewed for Andrew's case study...........................138

Figure 7 – Summary of participants interviewed for Bartholomew's case study.................140

Figure 8 – Summary of participants interviewed for Peter's case study..............................142

Figure 9 – Summary of participants interviewed for Miriam's case study............................144

Figure 10 – Themes and sub-themes in the data.................................................................146

LIST OF TABLES

Table 1 – Inclusion and exclusion criteria for study selection for the background literature

review.....................................................................................................................................28

Table 2 – Inclusion and exclusion criteria for the systematic narrative review......................53

Table 3 – Summary of the themes covered by each study for the systematic narrative review

............................................................................................................................................... 59

Table 4 – Inclusion and exclusion criteria for the recruitment of young people..................100

Table 5 – Inclusion and exclusion criteria for the recruitment of parents/carers................101

Table 6 - Sampling criteria for the recruitment of HCPs.......................................................102

Table 7 - The impact of the study on Twitter.......................................................................322

LIST OF APPENDICES

Appendix 1 - 12 key points to guide ACP discussions...........................................................352

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Appendix 2 - Characteristics of included studies table.........................................................353

Appendix 3 - Hawker et al.'s (2002) assessment framework................................................375

Appendix 4 - Hawker et al.'s (2002) scoring system.............................................................376

Appendix 5 - Summary of studies for literature review........................................................379

Appendix 6 - Demographic form..........................................................................................380

Appendix 7 - Invitation flyer.................................................................................................382

Appendix 8 - Information pack letter...................................................................................383

Appendix 9 - Example Participant Information Sheet (PIS for young people aged 13-15)....384

Appendix 10 - Invitation email to HCPs................................................................................386

Appendix 11 - Example interview guide for young people...................................................387

Appendix 12 - Example consent/assent form.......................................................................389

Appendix 13 - Example of post-interview support information...........................................390

Appendix 14 - Interview guide for parents/carers................................................................391

Appendix 15 - Interview guide for Healthcare professionals (HCPs)....................................393

Appendix 16 - Transcription convention..............................................................................395

Appendix 17 - Example of transcription...............................................................................397

Appendix 18 - Confirmation of Edge Hill University faculty research ethics committee (FREC)

approval............................................................................................................................... 398

Appendix 19 - Confirmation of National Health Service (NHS) research ethics committee

(REC) approval......................................................................................................................400

Appendix 20 - Confirmation of Health Research Authority (HRA) approval.........................405

Appendix 21 - Pseudonyms used in the study......................................................................406

Appendix 22 - Extracts from my personal reflective diary....................................................407

Appendix 23 - Conference presentations, September 2018.................................................408

Appendix 24 - Example of training undertaken for my PhD.................................................410

Appendix 25 - Individual Development Plan........................................................................411

ABBREVIATIONS AND TERMS

Abbreviation Term

ACP Advance Care Planning

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ACPs Advance Care Plans

ACPfYP Advance care planning for young people

AD Advance directive

ADRT Advance decision to refuse treatment

CYPACP Child and young person’s advance care plan

DMD Duchene Muscular Dystrophy

DNAR Do not attempt resuscitation

DNACPR Do not attempt cardiopulmonary resuscitation

DH Department of Health

EoL End-of-life

EoLC End-of-life Care

GSF Gold Standards Framework

HCPs Healthcare Professionals

LLCs Life limiting conditions

LCP Liverpool Care Pathway for the Dying Patient

LTCs Life-threatening conditions

MCA 2005 Mental Capacity Act 2005

NHS National Health Service

NICE The National Institute for Health and Care Excellence

TfSL Together for Short Lives

UK United Kingdom

ABSTRACT

Background: This thesis presents a multiple case study of the views and experiences of

young people, their parents/carers, and healthcare professionals (HCPs) of advance care

planning (ACP). There is a need to understand the engagement of young people in their own

ACP from the different, concurrent, perspectives of those people involved in the process.

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Method: A qualitative research design was employed to recruit participants, where young

people were identified as the unit of analysis. Data were collected using semi-structured

interviews. Findings are presented using thematic analysis and critical discourse analysis to

recognise the optimal timing of ACPfYP discussions, and barriers and facilitators to engaging

young people in their own care planning.

Findings: The study identified six key themes: understanding of ACP; advance care planning

for young people (ACPfYP) in practice; communication; education and training for HCPs;

relationships; and organisational structure and culture. Experiences of ACPfYP were mixed

across the case studies, but generally positive. Facilitators to the engagement of young

people include the initiation of ACPfYP by a consultant when young people are in their mid-

teens and their condition is stable. Triggers should be identified to begin age- and

developmentally-appropriate discussions, supported by written information. Standardised

documentation aids the communication and sharing of ACPfYP. Barriers to engagement

include poor communication, relationships which are dominated by a power discourse,

organisational structures and cultures which are inflexible and underfunded, and access to

affordable training for HCPs.

Conclusions: Unique and significant contributions to knowledge have been provided

through the research design and method of data analysis. Findings from this study provide a

new insight and understanding into the experiences of ACPfYP, and are important to inform

both practice and policy.

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Key Words: Advance care planning, young people, engagement, facilitators, barriers,

healthcare professionals, parents, carers, thematic analysis, critical discourse analysis

CHAPTER 1 – INTRODUCTION1.1 CHAPTER INTRODUCTION

The thesis presents an exploration of the views and experiences of young people, their

parents/carers, and healthcare professionals (HCPs) in the advance care planning (ACP)

process.

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This chapter will outline the background, focus, and context of the research topic. The aim

and objectives of the study will be presented to make clear its focus. The structure of the

thesis will also be outlined to provide an overview of the study. A summary will draw

together the content of this chapter.

1.2 RESEARCH BACKGROUND AND FOCUS

This background for the study will begin by providing the context for the development of

ACP in adults. Exploring the key themes in the literature, including a summary of different

forms of documentation used in the ACP process, will help situate the development of

advance care planning for young people (ACPfYP). Themes related to legislation and policy,

such as mental capacity, will be explored to indicate the effect of engaging people in their

own care planning when they have cognitive difficulties. Factors that facilitate or obstruct

ACPfYP will be presented in Chapter 2.

There is a mistaken belief that ACP is solely used for terminally ill elderly people (Emanuel et

al., 1991; Hynson, 2009). Yet an increasing number of young people with complex, life-

limiting conditions (LLCs), or life-threatening conditions (LTCs), could benefit from using ACP

(Together for Short Lives, 2012; Mitchell et al., 2015). Over 49,000 young people in the UK

currently have a LLC or LTC (Together for Short Lives, 2012, 2013, 2015d, 2015b). An

understanding of the experiences and level of engagement of young people in their own

ACP is important to delivering palliative care, particularly because their life expectancy is

higher than a decade ago (Fraser, et al. 2010; Ling 2012; Welsh Assembly Government

2014). Therefore, Chapter 3 will present a systematic narrative review to understand the

engagement of young people in ACPfYP.

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1.3 DEVELOPMENT OF ADVANCE CARE PLANNING (ACP) FOR ADULTS IN THE UK

Advance care planning for adults has been practised for a number of years in the US,

Canada, and Australia, and is based on the preservation of personal autonomy in decision-

making (Hayhoe et al., 2011). In the UK, The Gold Standards Framework (GSF), which has

been developed from 1998, supports a whole systems approach to improving end-of-life

care (EoLC) for all patients (Seymour et al., 2010). ACP is one element within the GSF which

has the aim of fostering communication and consistency between practitioners by using a

formal process to provide EoLC (Reynolds and Croft, 2010). ACP performs a number of

different functions, such as: the opportunity to consider aspects of loss of self at the end of

life; acknowledging the prospect of death and negotiating personal preferences around

future treatment; clarifying personal preferences around clinical interventions and personal

possessions in anticipation that capacity for making decisions will be lost; and discussing the

delegation of future care (Lund et al., 2015). Situating ACP within the context of United

Kingdom (UK) legislation is important to contextualise the process of planning future care.

1.4 THE MENTAL CAPACITY ACT (2005)

The Mental Capacity Act 2005 (MCA 2005) (Department of Health (DH) 2005) was the first

piece of legislation to create a framework for ACP (Hayhoe et al., 2011). Essentially, the MCA

2005 allows for three possibilities (Hayhoe et al., 2011):

1.4.1 AN ADVANCE STATEMENT OF WISHES (ADVANCE CARE PLAN)

The aim of ACP is to engage the individual in the care planning process to help plan future

care (The National Institute for Health and Care Excellence (NICE), 2017). Paperwork should

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therefore be designed as a guide for HCPs to aid communication and enhance their

response to family needs and requests (Noyes et al., 2013; Mitchell et al., 2014). The

emphasis is on involving relevant people to assist the process of improving both the

patient’s quality of life and their quality of death. Conroy et al. (2009) stated discussions

within the ACP process may lead to an advance statement or one of the following:

An advance decision to refuse treatment (ADRT);

The appointment of a personal welfare Lasting Power of Attorney (LPA).

1.4.2. AN ADVANCE DECISION TO REFUSE TREATMENT (ADRT)

The term ‘advance directive’ (AD) has been replaced more recently by other terminology,

such as ‘advance care plan’ and ADRT, which are outlined in the national guidance and the

MCA 2005 (Mullick et al., 2013). Whereas an AD focuses on specific wishes of the patient,

such as the refusal of medical treatment, an ADRT is a particular refusal of treatment(s) in a

predefined potential future situation (Henry and Seymour, 2008; Conroy et al., 2009).

Therefore, ADRTs are an example of ACP because they help prepare for multiple complex

decisions, but they do not cover the whole aspect of the patient’s care or include all of their

wishes (McMahan et al., 2013; Lyon et al., 2014). As a consequence, ACP ensures patients’

treatment preferences are respected during end-of-life care, which an AD is unable to do

(Lyon et al., 2014).

1.4.3. LASTING POWER OF ATTORNEY (LPA)

A LPA allows a patient to nominate someone they wish to transfer decision-making powers

to in anticipation of a future loss of decision-making capacity (Mullick et al., 2013; Gowing

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and Robinson, 2014). This definition means LPA is an example of ACP. There are two

different types of LPA:

‘Property and financial affairs’ helps the future management of money, bills,

financial accounts, property, investments and pensions (Open Government, 2016).

‘Health and welfare,’ gives authority for decisions about medical treatment and

personal welfare decisions, such as where to live. This option also includes the ability

to make decisions regarding life-sustaining treatment (Hayhoe et al., 2011).

Although ADRT and LPA can be applicable to young people, the MCA 2005 does not permit

16 and 17 year olds to enact them (South Central NHS Trust, 2011). However, it is useful to

understand how these options relate to one another (see Figure 1).

Figure 1 – Advance care planning (ACP) in context

(T

h

e

Gold Standard Framework, 2010)

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The term ‘advance care planning’ was used for this study because it provided a single

meaning, thus giving greater clarity and avoiding ambiguity caused by using multiple terms

(Russell, 2014).

1.5 LIVERPOOL CARE PATHWAY (LCP)

In the late 1990s, the Liverpool Care Pathway for the Dying Patient (LCP) was developed as

an integrated pathway to improve EoLC (Compassion in Dying, 2013). In doing so, the LCP

helped set out the use of ACP for adults and was adopted as a key aspect within the UK’s

first End of Life Care Strategy (DH, 2008b; Compassion in Dying, 2013). The introduction and

widespread use of the LCP has been attributed to different factors: firstly, that death and

dying was being discussed more openly in society; secondly, a general move in healthcare

towards greater patient choice; and thirdly, the increasing likelihood of patients wanting to

question their treatment plans, and both the role of their relatives and clinicians in making

decisions about them (Neuberger et al., 2013).

The LCP was intended to help provide the best possible care for dying patients (Compassion

in Dying, 2013). As part of this, best practice was transferred from hospices to other care

settings. This process was enabled by setting out a number of steps HCPs should take to help

make the dying patient as comfortable as possible (Compassion in Dying, 2013). The LCP

became the standard and most widely-used version of ACP. However, a number of high

profile cases and media reports between 2009 to 2012 resulted in an independent review of

the LCP (Nursing Times, 2012; Neuberger et al., 2013). The review recommended the

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discontinuation of the LCP (Neuberger et al., 2013); it was finally phased out in 2014

(National Health Service (NHS), 2015).

1.6 ADVANCE CARE PLANNING (ACP) DOCUMENTATION

Advance care planning documentation includes twelve key points to guide discussions

(Henry and Seymour 2008; see Appendix 1). ACP can also be carried out by means such as

the PEPSI-COLA checklist1 or Preferred Priorities for Care (PPC). PEPSI-COLA helps promote

holistic, personalised care at the end of life (Reynolds, 2010). In this sense, PEPSI-COLA can

help guide ACP discussions. PPC is a wishes document for anyone who wants to plan their

future EoLC. Therefore, PPC is an example of ACP and can be used for recording ACP

discussions and the resulting decisions (Seymour et al., 2010). The outcomes can include

recording important elements of care such as refusing specific medication (National Health

Service, 2016b). However, the lack of a set format for ACP has led to the use of numerous

ACP documents (Henry and Seymour, 2008; Brinkman-Stoppelenburg et al., 2014). The

variety of documentation includes the Do Not Attempt Resuscitation (DNAR) Order, the Do

Not Attempt Cardiopulmonary Resuscitation (DNACPR) Order and, more recently, the

Recommended Summary Plan for Research and Treatment (ReSPECT) document. One study

identified a dozen different ACP documents being used simultaneously across the UK, which

did not include variations of these documents or other paperwork used by smaller

organisations and charities (Conroy et al., 2009).

The development of ACPfYP originated in the Children Act (1989 and 2004), which

emphasised making decisions about children according to their best interests (South Central

1 This stands for Physical, Emotional, Personal, Social support, Information communication, Control and autonomy, Out of hours, Living with your illness, and Aftercare.

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NHS Trust, 2011). The MCA 2005 further allowed for young people to be involved in their

own care decisions (South Central NHS Trust, 2011). Consequently, the use of ACPfYP is in

UK policy, and its prevalence has increased since 2010 (TfSL 2015b, 2017; NICE 2017;

Hughes et al. 2018). However, the lack of current research to inform the engagement of

young people in ACPfYP from the perspective of everyone in the process of ACPfYP led to

the research aim and objectives for this study.

1.7 RESEARCH FOCUS

The focus of this study is to explore the views and experiences of young people, their

parents/carers and HCPs, of the advance care planning process. There is a need to

understand these views concurrently as research in this area does not presently exist

(Hughes et al., 2018). Therefore, the research aim and objectives will be set out below.

1.7.1 RESEARCH AIM AND OBJECTIVES

This research was conceived because of the growing amount of literature around ACPfYP

and the idea of developing the Liverpool Care Pathway for the dying child (Matthews et al.,

2006). I have a personal interest in the research topic because I am a parent, which will be

discussed in further detail in Chapter 4. A review of the literature related to ACP for adults

and ACPfYP indicated a gap in existing knowledge. Generating new knowledge is important

to understand different phenomena (Creswell, 1998; Damianakis and Woodford, 2012).

1.7.2 RESEARCH AIM

A multiple case study of the views and experiences of young people, their parents/carers

and healthcare professionals in the advance care planning process.

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1.8 RESEARCH OBJECTIVES

1. To explore the views and experiences of young people, their parents/carers, and

healthcare professionals using advance care planning.


healthcare professionals regarding the timing of the implementation of advance

care planning.


healthcare professionals of the barriers and facilitators to the engagement of

young people in the advance care planning process.

Case study methodology was considered the most suitable approach to meet the study aim

and objectives (see Methodology, Chapter 4) because it allowed an in-depth exploration of

the phenomenon of ACPfYP through the experiences of young people, their parents/carers,

and HCPs (Yin 2009, 2014; Thomas 2011). Case study methodology provided the means to

understand real-life settings within a health-related field (Crowe et al., 2011; Yin, 2014). An

in-depth, multiple case study approach also presented opportunities to gather multiple

understandings of ACPfYP through the triangulation of data (Yin, 2009; Yazan, 2015).

1.9 THESIS STRUCTURE

This thesis consists of ten chapters. Chapter 1, Introduction, contextualised the thesis and

explored the background of the study. The chapter stated the research aim and objectives,

and briefly outlined the chosen methodology utilised to answer the research question. The

layout of the thesis was stated to guide the reader through the study.

21

Chapter 2, a Background Literature Review, presents the factors that facilitate or obstruct

ACPfYP. This chapter provides context for the study by summarising key policies and

legislation related initially to ACP for adults, and then to ACPfYP, to help identify barriers

and facilitators to initiating and using ACPfYP.

Chapter 3, a Systematic Narrative Review, presents the literature related to the engagement

of young people in their own care planning process. This chapter is based on a systematic

review which was published in Palliative Medicine in 2018. The chapter narrows the focus of

the literature to provide a rationale for conducting the study, and so helps guide the reader

through the thesis.

Chapter 4, Methodology, presents the methodological approach for the study. This chapter

explains the ontological and epistemological viewpoint which forms the basis for adopting a

subjective, interpretivist methodology. Justification is provided for using case study

methodology for this research.

Chapter 5, Method, outlines the method used in the study and justifies the strategy for

recruiting participants and collecting and analysing the data. Rationale is provided for the

sampling of participants, and the ethical considerations inherent in research with vulnerable

populations. The use of individual, semi-structured interviews to collect data is presented,

and the employment of both thematic analysis and critical discourse analysis is explained.

22

Chapter 6, Findings: Thematic Analysis, presents the findings from the individual interviews.

The data is presented thematically to help understand the views and experiences of young

people, their parents/carers, and HCPs, of ACPfYP.

Chapter 7, Findings: Critical Discourse Analysis, explores the power relationships within

ACPfYP by employing critical discourse analysis to understand the data. This chapter

provides a further layer of analysis to appreciate the dynamics of communication and

relationships when understanding views and experiences of multiple perspectives in ACPfYP.

As with the data in Chapter 6, this chapter presents the analysis thematically to provide

consistency in presentation.

Chapter 8, Discussion, presents the discussion of the study findings stated in the previous

two chapters. By bringing together the findings of the study with existing literature and

policy, the timing of ACPfYP and the facilitators and barriers to engaging young people in

their own care planning process will be identified.

Chapter 9, Reflective Chapter, will summarise key points from the reflective diary which was

maintained during the recruitment and data collection stages of the study. This chapter

contains personal thoughts and considerations about the progress of the study and what

was learnt, both professionally and personally.

Chapter 10, Conclusion and Recommendations, outlines the contribution of the study to the

existing body of knowledge on ACPfYP, and the potential for the study to inform policy and

23

practice. Recommendations for future research are also presented, and the strengths and

limitations of the study are identified.

1.10 CHAPTER SUMMARY

This chapter has introduced the background, focus and context to the study by presenting a

brief history of ACP for adults and the available documentation. The research focus was

stated to identify the aim and objectives of the study. The thesis structure was outlined to

give an overview of the study and guide the reader through the presentation of the

research.

The next chapter, a background literature review, will set the scene for the study by

providing a review of current research, policy, and legislation, to understand the use of ACP

for adults and the development of ACPfYP. In doing so, facilitators and barriers to initiating

and using ACPfYP will be identified.

CHAPTER 2: BACKGROUND LITERATURE REVIEW – FACTORS THAT FACILITATE OR OBSTRUCT ADVANCE CARE

PLANNING FOR YOUNG PEOPLE (ACPfYP)

2.1 CHAPTER INTRODUCTION

The previous chapter presented the context of the study and the research focus. The

structure of the thesis was outlined as guide for the reader. This chapter will offer insights

into the factors that may facilitate or obstruct ACPfYP. To structure the review and provide

24

clarity for the reader, the literature review question will be stated initially. The chapter will

continue with an outline of the strategy for the literature search, and then a critique of the

literature will be presented under the broad key themes identified within it. This critique will

identify gaps in existing research and provide justification for the study. A summary of this

chapter draws together the review of the literature and highlights what is currently known

about the experiences of those involved in the process of ACPfYP.

2.2 LITERATURE REVIEW QUESTION

A review question helps search for relevant and reliable literature, and so contributes to a

robust study design and drives the research forward (Reiter, et al. 2011; Mallett et al., 2012;

Yazan, 2015; Paez, 2017). As such, a clear research question helps both outline the problem

to be researched and provide logic to the research process (Baskarada et al., 2013; Yin,

2014).

The question for the literature search was:

What are the factors that may facilitate or obstruct advance care planning for

young people?

2.3 SEARCH STRATEGY

Prior to undertaking a literature search, a search protocol was developed to help guide the

research process, improve methodological transparency of the research process, and

facilitate future study replication (Mallett et al., 2012). A protocol helped refine the search

and focus it specifically on ACPfYP. Furthermore, the process determined key words, and

inclusion and exclusion criteria (see following sections, and Table 1, below). A clear

25

approach also ensured literature was not duplicated and that the searches retrieved

relevant and broad literature from a range of sources. The use of a clear protocol helped

identify a gap in the existing knowledge base arising from the literature search.

The focus of the literature search was 2008 to 2018 as ACP was formally introduced from

2008 in the UK in the of the End of Life Care Strategy (Department of Health, 2008b). The

search was conducted to gather information from the most relevant time period: the

introduction, and initial years of implementation, of ACPfYP. The search for literature has

continued throughout this research study, as is permitted in case study research, to ensure

that all relevant studies are included (Yin 2012).

2.3.1 DATABASE SEARCHES

The databases of Cumulative Index to Nursing and Allied Health Literature (CINAHL

Complete), Medical Literature Analysis and Retrieval System Online (MEDLINE), PubMed,

and PsycINFO were searched for articles published from 1st January 2008 to 31st May 2018 to

ensure all relevant literature was included. Grey literature was searched using Google

Scholar and Open Grey. Grey literature is defined as any work that is published in print and

electronic formats but is not controlled by commercial publishers (Paez, 2017). Types of

grey literature include conference papers, government reports, and academic papers like

dissertations and theses, and can help provide a balanced view of the evidence (Paez, 2017).

The review included both qualitative and quantitative studies.

26

2.3.2 DATABASE SEARCH TERMS

Keywords help describe subject areas that are important to the study. Identifying key search

terms contributed to a rigorous literature review and so supports a clear and transparent

research design (Vom Brocke et al., 2009). Keywords, and a combination of key words,

focused on the aims of the study, and included ‘advance care plan’, ‘palliative’ and ‘choices’.

Variants of search terms were also included to account for international alternatives, such

as ‘advance care plan’: ‘advance directive’, ‘wishes’, and ‘choices’. Truncation was added

using an asterisk at the end of words to encompass different spellings or word endings, such

as ‘adolesen*.’ Each term variant was linked with the Boolean Operator ‘OR’, and key

concepts with ‘AND’. Where available, an advanced search strategy was implemented to

allow words to be searched in relation to their proximity to one another. The search terms

used in the literature review were: Advance care plan* OR ACP OR advance directive* OR

choices* OR wishes AND Paed* OR Child* OR Young person OR Adoles* OR teenage* AND

End of life OR Palliative*.

2.3.3 SELECTION CRITERIA

Studies were selected for review based on clear inclusion and exclusion criteria (see Table

1).

Table 1 – Inclusion and exclusion criteria for study selection for the background literature review

Inclusion criteria Exclusion criteria

Sources written in English.

Studies conducted at any location or

Sources written in languages other than English.

27

place of care.

Studies including evidence about ACPfYP (where young people are aged between 13 and 24 years old).

Sources published between 1st

January 2008 and 31st May 2018.

Sources focused on healthcare systems which include different decision-making processes than in the UK healthcare system.

Studies focused on advance care planning for adults (aged over 24 years) and children (aged under 13 years).

Sources published before 2008.

2.4 OVERVIEW OF THE STUDIES

This search produced 84 results, in which the research methods comprised:

26 papers which documented policy, framework and guidance for implementing and using ACPs;

19 articles which comprised discussion papers, editorials, commentaries, personal views, newspaper articles, or a report or evaluation of existing examples of these;

10 studies which used a questionnaire or survey to collect data;

8 studies used interviews;

4 studies each of randomised trials, a retrospective data collection method, or a mixed methods approach;

3 research papers which used a multiple qualitative methods approach;

2 studies which employed a literature search or systematic review;

1 study of each of the following data collection methods: secondary analysis; observational study; case study; working group.

A majority of the 84 sources focused on specific countries: the UK (n=42) and the US (n=21).

The majority of the other studies came from the following countries: Australia (n=4); the

Netherlands and Japan (n=2 each); and Switzerland, Germany, and Greece (n=1 each). The

remaining 10 studies had an international focus. The UK is newer than the US to ACP (Stein

and Fineberg, 2013), yet lessons can be learnt from different healthcare systems where

28

countries have similar attitudes to healthcare decision-making. As with the inclusion and

exclusion criteria outlined in Table 1 above, sources which focused on countries with

different healthcare decision-making systems than the UK were excluded from the search.

The principles underlying the provision of care in these systems limited the role of ACP, and

so were considered less useful for this study. For instance, in the Korean culture the

prolonging of a life can be perceived as dishonouring the individual, and so reduced the use

of ACP in these cultures (Kim and Foreman 2011). After applying this exclusion criterion, 75

sources remained. A summary of the literature search is in Figure 2 below.

Figure 2 – Summary of the literature search

29

This was not a systematic review, so an inclusive approach was adopted for this literature

review. All topic-relevant papers were included. The six main themes in the literature were:

communication; training and support for HCPs; allocation of resources; how ACPfYP works in

practice; relationships; and power dynamics. These themes will be outlined in turn below.

2.4.1 THEME 1: COMMUNICATION

A number of studies explored communication (n=24: (Wiener et al., 2008, 2012; Fried and

O'Leary, 2008; Lyon et al., 2009, 2017; Tsai, 2009; Hynson, 2009; Fraser et al., 2010;

Beringer and Heckford, 2012; Taylor, 2012; Durall et al., 2012; Boddy et al., 2013; Lotz et al.,

2013; Scott et al., 2013; Coleman, 2013; Foster et al., 2013; Jacobs et al., 2015; Teixeira et

30

al., 2015; Zadeh et al., 2015; Liberman et al., 2016; Siden and Chavoshi, 2016; de Broca et

al., 2016; Pereira-Salgado et al., 2017; Freytag and Rauscher, 2017).

Good communication is central to ACP (Zadeh et al., 2015). Communication was

strengthened in ACPfYP by exploring the experiences of the young person (Foster et al.,

2013). Understanding the importance of developing effective communication to do this was

a crucial element in ACPfYP because young people were sometimes unclear about how to

communicate their wishes (Taylor, 2012). Therefore effective communication helped relieve

stress during some discussions for ACPfYP, and so facilitated the process of ACPfYP (Wiener

et al., 2012).

During ACPfYP, the different parties communicating with each other set the parameters and

negotiated any conflicts that arose (Freytag and Rauscher, 2017). Co-operation, as part of

on-going conversations, established an example for effective relationships between those

involved in ACPfYP (Wiener et al., 2012; Freytag and Rauscher, 2017). Communication

between services could sometimes be disjointed, perhaps reflecting the challenges of

working in multi-professional teams (Beringer and Heckford, 2012). Fragmented

communication may explain why HCPs and families have reported feeling uncomfortable

when discussing ACPfYP (Liberman et al., 2016). Nevertheless, research suggested young

people and their relatives wanted better, and facilitated, communication to help improve

their ability to make decisions at the end-of-life (Lyon et al., 2009; Lotz et al., 2013). These

findings contrasted with subsequent research, which suggested that young people were

comfortable discussing and recording EoL decisions (Jacobs et al., 2015). Instead, adults

assumed that these conversations were awkward, embarrassing, and best avoided (Jacobs

31

et al., 2015). The study by Jacobs et al. (2015) was beneficial because it included the views

of young people and family dyads (n=17) as well as oncology providers (n=30). However, the

use of surveys did not allow feelings and experiences to be fully captured by the

researchers. Furthermore, this study represents a gap in the current knowledge-base

surrounding perceptions of young people in ACPfYP, their role in the process, and the lack of

qualitative research to understand these perspectives.

HCPs lacked knowledge around ACP processes, which presents a reluctance to engage in

ACP discussions because of feeling uncomfortable, or a worry of saying, or doing, the wrong

thing (Hynson, 2009; Boddy et al., 2013). As a result, HCPs were fearful because of potential

litigation from family members or incompatible religious beliefs and cultural attitudes of

patients and their family (Coleman, 2013). Research from the UK and United States (US)

indicated that physicians have a greater reservation than other HCPs about the applicability

of ACP documentation (Teixeira et al., 2015). However, there is very little literature

indicating the impact of these challenges for the implementation of ACPfYP, which confirms

a gap in the current literature and indicates further research is needed.

In ACPfYP, discussions may be complicated by the level of age- or developmentally-

appropriate communication, in both verbal interactions and documentation, and the level of

decisional capacity of the patient (Wiener et al., 2008; Tsai, 2009; Scott et al., 2013; Lyon et

al., 2017). Communication in ACPfYP can be further complicated by the variety of

documentation available, but there is a lack of research in the area of ACPfYP to determine

the extent of this problem (Hughes et al., 2018). Perceptions of cultural and religious beliefs

may have created an additional barrier to effective communication during discussions in

32

ACPfYP (Pereira-Salgado et al., 2017). Ambiguous, inconsistent, or unsuitable, use of

language is not conducive to positive relationships or recording of wishes.

Poor communication sometimes lead to disagreements and misinterpretation, which

impeded the implementation of ACPfYP; this is why communication was described as an art

(Fraser, et al. 2010). Where this art was practiced, communication aided ACPfYP and vice

versa (Wiener et al., 2008). Durall et al. (2012) suggested discussions around ACPfYP are not

as effective as they could be because they occurred infrequently or are initiated at the

advanced stages of LTCs. Therefore, starting discussions earlier in ACPfYP is likely to be a

benefit for everyone involved (de Broca et al., 2016). Furthermore, multiple, ongoing

ACPfYP discussions may create opportunities for young people and their parents/carers to

identify new or different goals as needed (Siden and Chavoshi 2016). Recollections of missed

opportunities for the caregiver might be a trigger to start ACPfYP discussions (Fried and

O’Leary 2008). A far greater barrier from the perspective of HCPs was the parental

understanding and attitudes towards their child’s prognosis (Durall et al., 2012). Improved

training for HCPs may benefit clinical response and help reduce these barriers (Durall et al.,

2012). The research by Durall et al. (2012) was significant in that it included a considerable

number of responses from HCPs in paediatric care (n=266; 54% response rate), yet there is

still little research to explore how far their suggestion about improving training has

progressed since the study was conducted.

Issues around implementing ACPfYP were compounded by a lack of discussion of EoLC

(Neuberger et al., 2013; Mitchell et al., 2015). Additional factors such as age, race, culture

and attitudes (Tolle and Tilden, 2002; Lotz et al., 2013) helped create what Coleman (2013)

33

described as a negative societal culture towards death and dying. These elements may also

explain the ‘disconnect’ between discussing EoLC with family members, completing

appropriate documentation, and communicating them effectively with primary care

physicians (Go et al. 2007: 1489-1490). Research by Go et al. (2007) was based on a

questionnaire, which potentially limited the richness of data. Nevertheless, the study did

include responses from 134 different HCPs (response rate of 79%) via a web-based survey,

which contributed to a valuable and rigorous study to meet its aims. The findings also

supported those of Coleman (2013), which was based on a high response rate for a postal

questionnaire (64%; n=643).

The importance of effective, clear communication in ACPfYP is evident but needs additional

research (Lyon, 2017). A qualitative approach to understand the perspective of all people in

the process of ACPfYP is also required to meet the shortage of existing qualitative studies in

this area. This viewpoint will be investigated further in Chapter 3, where the engagement of

young people in their own ACP will be outlined.

2.4.2 THEME 2: TRAINING AND SUPPORT FOR HEALTHCARE PROFESSIONALS (HCPS)

Various studies identified with the theme (n=12; Hynson, 2009; Seymour et al., 2010; Durall

et al., 2012; Mullick et al., 2013; Stein and Fineberg, 2013; Sanderson and Wolfe, 2014;

Zadeh et al., 2015; Basu and Swil, 2016; Cass, 2016; O’Hare et al., 2016; Worster, 2016;

Yotani et al., 2017).

Similar to ACP with adults, training for HCPs implementing and using ACPfYP was a concern

(Zadeh et al., 2015; Yotani et al., 2017). Indeed, up to 53% (n=93/186) of paediatric

34

neurologists acknowledged training was one of the main barriers influencing ACPfYP (Yotani

et al., 2017). Similarly, a lack of support for HCPs, and a shortage of laws and guidance for

HCPs using ACPfYP, were also identified as particular worries (Yotani et al., 2017).

Social workers’ anxieties about the quality of available training was acknowledged as a

concern when implementing and using ACPfYP, although this research excluded HCPs.

(Stein, 2013). However, HCPs identified a lack of formalised training in ACPfYP as an anxiety,

especially for nurses compared to more senior HCPs (Sanderson and Woolfe, 2014; Basu and

Swil, 2016). The study by Sanderson and Wolfe (2014) was significant because the sample

included a large number of HCPs (n=266; response rate=53.6%). The majority of the

respondents were nurses (n=159, compared to 107 physicians). Participants also

represented different specialities (Cardiac Intensive Care Unit (CICU), Intensive Care Unit

(ICU), and oncology), a range of experience (from under 10 years to over 20 years), and

different genders, ethnicities, and races. Therefore, this research helped understand a

professional perspective of training available to HCPs working with ACPfYP. Yet the use of a

large survey did not fully capture views and experiences. The study also excluded non-

professional attitudes to ACPfYP and so missed a holistic view of ACPfYP from different

perspectives of those involved.

The importance of training was more apparent when comparing ACPfYP with ACP for adults.

Research indicated the need for more universal training for HCPs initiating and using ACPfYP

(Durall et al., 2012; Cass, 2016; Worster, 2016). Although this view was contradicted by

O’Hare et al. (2016), there is limited evidence to suggest how the current level of training

and support impacts on the timing of implementing, and the effective use of, ACPfYP

35

(Seymour et al., 2010). Understanding HCPs could benefit from specific training may

facilitate both communication and the effectiveness of ACPfYP (Seymour et al., 2010;

Mullick et al., 2013). Acknowledging the gap between the current provision of training and

what could possibly be offered could also highlight the breakdown in service provision

(Hynson, 2009). Therefore, a more focused search of the literature is needed to understand

how far training impacts on ACPfYP.

2.4.3 THEME 3: ALLOCATION OF RESOURCES

A number of studies identified the allocation of resources as a key theme for ACP for adults

and ACPfYP (n=15: Noyes and Lewis, 2005; Hynson, 2009; Seymour et al., 2010; Miller, 2010;

NPeolcP, 2010; Stein and Fineberg, 2013; Mullick et al., 2013; Welsh Assembly Government,

2014; Zadeh et al., 2015; Forster and Hafiz, 2015; Basu and Swil, 2016; Cass, 2016; Liberman

et al., 2016; Yotani et al., 2017; Freytag and Rauscher, 2017).

Evidence suggested young people would benefit from a tailored individual care package,

and the need for effective resources is even more acute in the care of young people than in

adults:

‘As with all services for young people, a unique feature is the need to recognise that children grow and develop, and at each stage to develop supportive, timely and appropriate interventions to ensure that the young person can continue to access appropriate services and resources so they may be as fully included as possible’ (Noyes and Lewis 2005b: 5).

This needs-led approach, where services are provided on the basis of the needs of the

patient rather than by assessing the availability of resources, is important for good care

(Miller, 2010). However, a deficiency of resources in some areas of children’s and young

people’s EoLC included limited access to both education and training (Seymour et al., 2010,

36

Welsh Assembly Government, 2014). Palliative care was focused more on provision for

adults than for young people, which further impacted on the means to deliver paediatric

palliative care (Cass, 2016). Additionally, HCPs’ knowledge of available resources was mixed,

but generally poor (Zadeh, 2015; Basu, 2016; Liberman, 2016). The awareness of resources

is important because HCPs’ self-efficacy in relation to ACPfYP can depend partly on the

means available to them, including seeking their own methods of support (Forster et al.,

2015; Freytag, 2017). Support available for parents/carers was less clear, but HCPs

recognised the impact of a lack of support for professionals being transferred to the quality

of support they offered other people (Forster and Hafiz, 2015). The availability of resources

has improved more recently and may also produce a more effective and creative use of

them (Hynson, 2009; National Palliative and End of Life Care Partnership, 2010). However,

there is no up-to-date evidence to support the view that training for HCPs initiating and

using ACPfYP has improved.

Another potential barrier in ACPfYP, as in ACP for adults, was having time to initiate and

continue discussions and complete documentation (Mullick et al., 2013). HCPs identified

that a shortage of time was a significant factor, which creates a barrier to implementing and

using ACPfYP (Zadeh et al., 2015; Liberman et al., 2016; Yotani et al., 2017). Concerns about

the availability of resources also limited options for ACPfYP decisions, and so increased

patients’ fears of EoL (Stein and Fineberg, 2013). Yet the concerns expressed by Stein and

Fineberg (2013) are hypothesised and based on a comparative analysis of policy and

implementation in the US and the UK. Additionally, only the study by Zadeh et al. (2015)

included the views of young people; others focused on the views of families and

professionals, and so excluded the views of young people within ACPfYP.

37

2.4.4 THEME 4: HOW ADVANCE CARE PLANNING FOR YOUNG PEOPLE (ACPFYP) WORKS IN PRACTICE

A large number of sources identified with this theme (n=22: Simon et al., 2008; Wiener et

al., 2008, 2012, Lyon et al., 2013, 2014; Tsai, 2009; Lyon et al., 2009; Fraser et al., 2010;

Garvie et al., 2012; Zhukovsky et al., 2013; Mitchell, et al., 2014; Sanderson and Wolfe,

2014; Horridge, 2014, 2016; Kimmel et al., 2015; Dallas et al., 2016; Rietjens et al., 2016;

Rietjens, Korfage and van der Heide, 2016; Liberman et al., 2016; CYPACP Collaboration,

2017a; Yotani et al., 2017; Loeffen et al., 2017). The status of the UK as one of the leading

countries in the world for paediatric palliative care has been reflected in the provision of

relevant guidelines and resources for its implementation (Liberman et al., 2016). ACPfYP is

arguably different from ACP for adults because young people are particularly vulnerable

(Zhukovsky et al., 2013). Therefore, how ACPfYP works in practice is an important

consideration.

Research from Japan indicated about half of paediatric neurologists did not have ACPfYP

discussions with younger patients, while over three-quarters of the neurologists did not

have such discussions with patients’ families (Yotani et al., 2017). This study was useful to

identify the implementation of ACPfYP in certain fields of paediatric care (neurology and

haematology), and was particularly important because it included young people in the

phase of EoLC where prognosis was under 3 months. Furthermore, the sample of paediatric

neurologists (n=186)) was large enough to indicate clear trends in the findings. However, a

self-reported questionnaire to assess practice was a weakness of the study. Despite the use

of a 5-point Likert Scale, this method of data collection did not allow researchers to fully

understand views and experiences of HCPs (Treadwell, 2011). The exclusion of young people

38

from the study was also significant because the researchers aimed to identify attitudes and

barriers to ACPfYP, but risked bias by ignoring views of the young people themselves.

Various documents, such as The Wishes Document (Fraser et al., 2010) and My Choices

(Wiener et al., 2008, 2012), have been used for recording ACPfYP. Strategies, such as FAmily

CEntered (FACE) ACP (Lyon et al., 2009, 2011, 2013; Kimmel et al., 2015; Dallas et al., 2016),

have been adopted alongside the documentation to engage people in the process. Together

for Short Lives (TfSL) has developed a range of resources to guide ACPfYP and support those

implementing and using planning tools. The Council for Disabled Children has added e-

Learning resources, regional exemplar templates, a parent information leaflet, and video

exemplars of enacted difficult conversations with families (Horridge 2014; 2016). More

recently, the Child and Young Person’s Advance Care Plan (CYPACP) documentation has

been devised in the UK (Child and Young Person’s Aadvance Care Plan Collaboration,

2017b). The range of documentation has impacted on the effectiveness of communication

across ACPfYP, and the availability of training and education for HCPs (Tsai, 2009; Sanderson

and Woolfe, 2014; Rietjens et al., 2016). As with ACP for adults, a difficulty of identifying the

challenges for implementing and using ACPfYP was the variety of ACP documentation

(Rietjens et al., 2016). Challenges posed by these problems may be offset by greater patient

involvement in ACPfYP, but there is limited research to understand this perspective in

ACPfYP (Simon et al., 2008).

Although standardised documentation for ACPfYP is being developed, the current variety is

represented in its uptake and variance by region (Mitchell et al., 2014). The study by

Mitchell et al. (2014) was beneficial to benchmark the use and development of ACPfYP

39

documentation, and included responses from lead clinicians (n=24; response rate=86%) at

UK paediatric intensive care units (PICUs) (n=28). However, the research by Mitchell et al.

(2014) is now outdated and does not reflect the position in the UK in 2019, particularly since

the development of the CYPACP. Therefore, research needs to be conducted to recognise

these recent developments and how far they facilitate the use of ACPfYP.

There is currently a lack of evidence-based research to determine the precise use of ACPfYP.

Consequently, the current application and effectiveness of ACPfYP is vague and there is no

clear-cut path to inform ways to involve young people more effectively in their own care

choices. Initiating ACPfYP at the right time is important (Loeffen et al., 2017), yet there is no

indication in the literature as to how, or when, this should be defined. Evidence suggested

ACPfYP has a positive impact on parental bereavement by providing peace of mind for their

child (Zhukovsky et al., 2013), but there is a lack of qualitative evidence to support this view.

ACPfYP is further complicated by a number of factors such as family dynamics, style of

communication, and confidence to engage in ACPfYP (Zhukovsky et al., 2013). Most

research focuses on the parties involved in ACPfYP but excludes the engagement of young

people. To this end, Chapter 3 explores the engagement of young people in their ACP.

2.4.5 THEME 5: RELATIONSHIPS

Various sources identified with this theme (n=12: Durall et al., 2012; Wiener et al., 2012;

Billings and Holdsworth, 2013; Ruppe et al., 2013; Zadeh et al., 2015; Lotz et al., 2015; Noble

et al., 2015; Basu and Swil, 2016; Dellon et al., 2016; O’Hare et al., 2016; Rietjens, Korfage

and van der Heide, 2016; Yotani et al., 2017).

40

Effective ACP is built on sound relationships between all parties involved in the process,

which, in turn, helped young people gain the autonomy and independence that may have

decreased during the progression of their condition (Wiener et al., 2012; O’Hare et al.,

2016). However, relationships within ACPfYP can be complex (Dellon, 2016). Where good

relationships did not exist, HCPs expressed difficulty in implementing and using ACPfYP

(Yotani et al., 2017). A poor relationship with the young person and their family left HCPs

unsure of the degree of trust between them, hesitant of their readiness to have ACP

discussions, and not knowing what to say as part of those discussions (Yotani et al., 2017).

Likewise, young people and their families wanted a positive relationship with HCPs, but

stated it was not always present (Zadeh et al., 2015).

Altered family structure and responsibilities can also play a large part in the effectiveness of

family involvement in ACPfYP (Billings and Holdsworth, 2013). Variances in how parents, the

multi-professional team, and the young person themselves, perceived the illness and the

care provided lead to complications in providing ACPfYP. Arguments between different

parties, and a divergence of approaches to truth-telling between HCPs and parents/carers,

resulted in unsatisfactory care being delivered within a poor quality environment (Noble et

al., 2015). These differences may also affect the relationship between carers and HCPs,

creating an obstacle to ACPfYP. Secondary research, such as that by Noble et al. (2015), may

address critical gaps in knowledge around the use of ACPfYP and the importance of

providing high quality EoLC, but may also focus disproportionately on the medical side of

ACPfYP. Emphasis on medical procedures and the professional relationships of HCPs could

result in ignoring the experiences and views of the patient.

41

To resist conflicts and clarify relationship roles, there is a need to identify a single

professional point of contact for the young person and their parents/carers (Lotz et al.,

2015). HCPs suggested discussions around ACPfYP often began too late in the patient’s

clinical course (Durall et al., 2012; Basu, and Swil 2016). Starting conversations close to EoL

could create a barrier to using ACPfYP by causing further strain on relationships. However,

research does not currently exist to explore the timing of engagement of these different

parties and the resulting experiences within the ACPfYP process (Rietjens et al., 2016).

Ruppe et al. (2013: 833) used two vignettes to describe cases ‘that would be commonly

encountered in [a paediatric] intensive care unit,’ to explore engagement in the decision-

making process. While this method might identify some experiences of engaging

parents/carers in decision-making, using just two vignettes may have limited the value of

the study. A further weakness could be the use of fictional accounts rather than real

experiences. Research participants (n=364; response rate=54%) were also restricted to

HCPs, which potentially limited the focus, and findings, of the study as the views of

parents/carers omitted. The use of vignettes was followed up by a series of questions, but

details could have been forgotten or misremembered from reading the scenarios. The sense

of detachment from not being personally involved in the cases may also have rendered

them of limited use. Nevertheless, the findings may be valuable as a basis to understand

how decisions are made in palliative care. The large sample size and response rate in the

study included professionals engaged in ACPfYP, so filling a gap in the knowledge-base of

implementing ACPfYP. Research is now needed to explore the views and experiences of

ACPfYP from the perspectives of everyone concurrently. Acknowledging multiple attitudes

will help understand the phenomenon of ACPfYP and how it works in practice. Moreover,

42

the involvement of the young people in these decisions needs further exploration to

determine the decision-making process and its effectiveness.

2.4.6 THEME 6: POWER DYNAMICS

ACP should help empower patients, and this partly involves using communication to transfer

control from HCPs to patients to help them make decisions about their future (The Gold

Standard Framework, 2010; O’Hare et al., 2016; Wardle, 2016). Although UK legislation

requires the inclusion of patients’ views as part of ACP, ACPfYP can be complicated by

competing agendas of different people, complex terminology and a variety of

documentation (Russell, 2014). The power relationships between different HCPs inhibited

ACPfYP by frustrating professional relationships and constructive communication (Seymour

et al., 2010; Fletcher et al., 2015).

Protheroe et al. (2015) explained how written communication can be scored using the

Flesch Reading Ease test and the Flesch-Kincaid Grade level test. The Flesch Reading Ease

test rates text on a 100-point scale; the higher the score, the easier the information is to

understand. A standard document should aim to score between 60 and 70. Similarly, the

Flesch-Kincaid Grade Level test rates information on the accessibility of the document for

school students. A standard document scoring between 7 and 8 is accessible for students in

the first two years of secondary school. Within both scores, the average sentence length

and the average number of syllables per word are measured. There are some clear

limitations to this approach of assessing the use of language. For example, a well-

understood word such as ‘television’ might have multiple syllables yet be easy to

understand; conversely, a less-familiar word such as ‘stoma’ is relatively shorter but more

43

difficult to understand (Protheroe, 2015). Yet these tests can indicate the use of medical

jargon, and so can indicate the level of accessibility of the information for young people and

their parents/carers (Protheroe, 2015).

A power imbalance in relationships between HCPs and patients was also more evident

where there are ethnic differences and a perceived gap in authority, knowledge, or ages of

people involved in making healthcare decisions (Joseph-Williams et al., 2014). Disparities

were sometimes expressed in silences and hesitations during communication, which

allowed an individual to pause and assess the situation before responding (Johnson et al.,

2009). Uncertainty markers, and instances of self-monitoring, can represent a submission to

power or simply a cautious opinion when looking at the context of the communication (van

Dijk, 1993; Dickson-Swift et al., 2006; Lund et al., 2015).

In addition, the provision of care is influenced by perceptions of power, structures and

context (Parker et al., 2014). The lack of power experienced by young people in healthcare is

representative of their social power (Carter and Ford, 2013). When young people are

unwell, there can be a huge impact on the young person and their family. Illness can lead to

a change in hopes and dreams, and a vulnerability and powerlessness for both young people

and their family (Hechter et al., 2008; Barling et al., 2014). Finding ways to help young

people and their family members relax and feel comfortable can help them tell their stories

and relate to others around them (Gaab and Steinhorn, 2015). In paediatric care, the onus is

on HCPs to use existing relationships to empower young people through ACPfYP (Harrington

Jacobs, 2005; Zadeh et al., 2015; Kazmerski et al., 2016). However, there are various reasons

this does not always happen, such as a HCP’s lack of knowledge and training around ACPfYP,

44

and these can have negative consequences for relationships in ACPfYP (Hinds et al., 2005).

HCPs may also be tempted to engage in power relationships between family members

rather than aiming to empower young people (Harrington Jacobs, 2005). Another

contributing factor which may influence the power dynamics in ACPfYP is the age of the

young person (Bell, 2013). Relationships, and their impact on ACPfYP, can be further

influenced by the powerlessness of parents/carers when their child is unwell (Together for

Short Lives, 2012). In this sense, all family participants involved in ACPfYP need to be

empowered to be engaged in the process. (Together for Short Lives, 2015c). Research

should now focus on providing patient-centred care by understanding both the role of

power and how to reduce the imbalance in relationships and communication.

2.5 THE PERSPECTIVE OF EXISTING RESEARCH

The GSF introduced the opportunity for ACP for adults in 1998, and the EoL Strategy (DH,

2008) was the first real policy driver across England for ACP. The associated National End of

Life Care Programme was supported by other initiatives such as PPC and the LCP (Seymour

et al., 2010; Neuberger et al., 2013). However, legislation, policies and initiatives, and

documentation associated with them, focused on ACP for adults. Although the number of

publications focusing on ACP roughly doubled between 2010-2015 compared to 2005-2010,

most literature still focused on ACP with adults (Durall et al., 2012; Lotz et al., 2015;

Downing, 2016; Rietjens et al., 2016).

One systematic review identified there is still a need to routinely incorporate ACP into

clinical practice (Lund et al., 2015). A weakness of this study is that the articles focused

almost exclusively on ACPs in adult care, with 7 out of 13 papers concentrating specifically

45

on the elderly, care homes, residential homes or dementia care. Of the 13 articles identified,

not one study explored ACPfYP. Furthermore, a systematic review of just 13 adult-focused

studies may not reflect the complete knowledge-base on the topic of barriers and

facilitators to implementing ACP. The findings may also not be directly transferable to

ACPfYP and these studies exemplify the lack of understanding in the use of ACPfYP.

Additionally, evidence suggested that ACP positively impacts the quality of EoLC (Brinkman-

Stoppelenburg, 2014). However, this systematic review did not focus on ACPfYP, and so

lacked the perspective of young people. Previous research into ACP which concentrated on

older populations (such as Seymour et al., 2010; Carr, 2012; Teixeira et al., 2015; Thoresen

and Lillemoen, 2016) were of limited value to understand the large population of young

people with LLCs within the context of ACPfYP.

Research indicated that ACP positively impacts on patients’ place of death (Abel et al.,

2013). However, this UK-based retrospective study was focused on adults (n=969; mean

age=74.4 years) and did not include young people (Abel et al., 2013). Therefore, the results

may have omitted some of the complex relationships involved in providing palliative care for

children. Discussions surrounding some of these issues, such as the degree of mental

capacity (see, for example, Russell 2014; How and Koh 2015) and communication (such as

Heale 2016), were opinion-based articles which could also limit their validity. The

importance of communication should be acknowledged, despite the difficulty of transferring

the findings of ACP for adults to ACPfYP and recognising the needs of the dying young

person as being different from those of the dying adult (Matthews et al., 2006; Lotz et al.,

2013).

46

Various documentation has been used since the 1990s to record ACPfYP but the view that

ACPfYP is an important part of HCP practice is not matched by the amount of research into

ACPfYP (Lo, 2004; Seymour et al., 2010). Accordingly, there is a gap in understanding the use

of ACPfYP and its effectiveness.

While some research (such as Brinkman-Stoppelenburg et al. 2014) identified important

issues relating to how ACP for adults works in practice, there is insufficient research on how

to engage young people effectively in their own care planning (Taylor, 2012). Furthermore,

studies are often limited in their breadth, or restricted by their country, or participant focus

within ACPfYP. The main views of ACPfYP in practice are supported by Mullick et al. (2013),

but their literature review was not exhaustive and the paper focused on both adults and

young people. Further research by Horridge (2014) made a case for using ACPfYP, but her

review of contemporary discussions of the topic consolidated existing information from the

point of view of HCPs rather than developed the justification for ACPfYP from the

perspectives of all parties involved in the process.

In contrast, one evaluation of the use of ACPfYP focused on a document audit of ACPs

(n=18), and included interviews with families (n=4) as well as focus groups with HCPs (n=17)

(Billings and Holdsworth, 2013). While this research provided useful direction to aid the

understanding of procedural issues, there lacks qualitative research which identifies young

peoples’ experiences at the centre of the ACPfYP process. Existing studies also failed to

explore the views and experiences of everyone concurrently as part of understanding how

ACPfYP works. Nevertheless, research has helped identify general issues around

47

communication: inconsistencies in the structure and format of documentation have led to

variation of completion, and a confusion between instruction and provision of information.

A manual retrospective review of healthcare records (n=114 from 48 children) identified less

than two thirds of young people had documented plans for specific care during their life,

and less than half of them had recorded any plans for what they wanted to happen to them

after their death (Beringer and Heckford, 2012). Although this study employed a rigorous

research method, a retrospective review of documentation only revealed part of the

planning process because of the exclusion of non-written communication during the

planning process. This missing element of communication is important to help understand

the experiences generated by the planning process. Exploring the experiences of the young

person and their parents/carers can help build a comprehensive understanding of effective

communication as a facilitator within ACPfYP (Foster et al., 2013). However, this research

does not currently exist. Nevertheless, the research by Beringer and Heckford (2014) was

conducted across a range of services, which can help give a clearer indication of the

prevalence of ACPfYP.

Although quantitative approaches might gather valuable data, they are limited in their

scope to explore the experiences of participants and pinpoint key challenges and

opportunities they face during ACPfYP implementation (Carr, 1994). Similarly, systematic

literature reviews, database searches, and what Horridge (2014: 380) refers to as ‘a dearth

of randomised, controlled trials,’ are of limited use to understand ACPfYP for the same

reasons. A qualitative focus would help investigate depth of thoughts and feelings, and

48

reduce the burden on participants because of the opportunity to gather data from multiple

sources (Yin 2012). However, this research is not currently available.

2.6 CHAPTER SUMMARY

Provision of sufficient contextual information is an important aspect of a rigorous

methodology (Yin, 2003). This chapter has presented the contextual background of ACPfYP

by outlining key themes from relevant literature. A critical review of the literature confirmed

some of the key facilitators and obstacles to ACPfYP: communication; training and support

for HCPs; allocation of resources; how ACPfYP works in practice; and relationships. Power

dynamics was also highlighted as an important additional aspect to consider in ACPfYP.

The literature review identified a gap in the existing research, which includes the absence of

qualitative studies to understand the engagement of young people in their own ACP.

Furthermore, a lack of qualitative research to explore the views and experiences of young

people, their parents/carers, and HCPs concurrently in ACPfYP was also apparent. Research

into ACPfYP is needed to help identify key barriers and facilitators to engaging young people

in their own care planning, and recognise the problems identified about the timing of

ACPfYP discussions. The failure of existing research to include these elements should not be

interpreted as the ineffectiveness of ACPfYP (Song, 2016). Overall, the literature review

revealed an emphasis on discussion papers and legislation, although clear themes were also

present in previous research. The literature suggested patients should be the focus of

ACPfYP (Stein and Fineberg, 2013). However, the lack of evidence about ACPfYP, and

specifically the involvement of young people in the process, signifies there is a relatively

weak evidence-base to inform ACPfYP. In light of the findings from this literature review, a

49

focused and systematic review is needed to provide a greater understand the role of young

people in ACPfYP. Chapter 3 will present a systematic narrative review of the literature to

explore the engagement of young people in their own ACP.

CHAPTER 3 – A SYSTEMATIC NARRATIVE REVIEW OF THE ENGAGEMENT OF YOUNG PEOPLE IN THEIR OWN

ADVANCE CARE PLAN (ACP)3.1 CHAPTER INTRODUCTION

The previous chapter presented the literature around factors that may facilitate or obstruct

ACPfYP. As identified in Chapter 2, the current evidence-base does not inform how young

people should be involved in the ACPfYP process. Understanding how far young people are

engaged in planning their own care is important to help influence future practice and

facilitate young people’s wishes (Hughes et al., 2018). Therefore, this chapter reviews

research which focuses specifically on the engagement of young people in their own ACP.

The information in this chapter draws strongly on a peer-reviewed article published in

Palliative Medicine in May 2018 (Hughes et al., 2018).

This chapter will present the review question, the search strategy, and the method of

synthesising the identified literature. In line with the presentation of the literature in

Chapter 2, and to ensure a consistent approach to understanding the literature, this chapter

will present the themes identified in the studies. The main findings from the literature will

be drawn together in a summary at the end of the chapter.

50

3.2 REVIEW QUESTION

Following the broad literature search set out in Chapter 2, it was recognised that little was

known about the engagement of young people in the ACPfYP process. Therefore, the

research focus was narrowed to concentrate on ACPfYP using the following research

question:

What are the factors that may facilitate or mitigate engagement of young people in their own ACP?

To help recognise barriers and facilitators to engaging young people in their own ACP, this

systematic narrative synthesis has three objectives to identify key stages of the process and

how this impacts on the engagement of young people:

1. to explore who is involved in the advance care planning process;

2. to explore when the process is started; and

3. to explore how key participants (young people, their parents/carers, and HCPs) are engaged in the process of ACPfYP, and how this facilitates or mitigates engagement of young people.

3.3 METHOD

A systematic review aims to collate all empirical evidence that fits particular eligibility

criteria to answer a specific research question (Liberati, 2009). Clear, systematic methods

minimise bias and provide reliable findings from which conclusions can be drawn (Liberati et

al., 2009; Cruzes et al., 2015). A systematic narrative review was the chosen method for this

second literature review because it can help manage a large evidence base, comprising

diverse evidence types (Popay et al., 2006). Additionally, a systematic narrative review

provides a clear summary of varied literature, and so was considered the most appropriate

method for presenting the engagement of young people in their own ACP (Liberati et al.,

51

2009). A narrative synthesis helps present themes by bringing information together to tell a

story within a transparent process (Popay et al., 2006; Cruzes et al., 2015). The review was

registered with PROSPERO (registration number: CRD42017079823) in November 2017.

3.4 SEARCH STRATEGY

3.4.1 DATABASE SEARCHES

The databases of CINAHL Complete, MEDLINE, PubMed, and PsycINFO were searched for

articles published from 1st January 1990 to 31st October 2017. As with the literature search

for Chapter 2, searches included existing literature and grey literature to identify all

available evidence on the involvement of young people in their ACP. The review included

both qualitative and quantitative studies and incorporated all study types. Citation searching

and reference list checking was performed on all identified papers (Popay et al., 2006).

3.4.2 DATABASE SEARCH TERMS

Medical subject headings (MeSH), or a thesaurus, were employed to conduct the search,

where possible. The search terms used in the literature review were: advance care plan* OR

pACP OR ACP OR wishes document OR wishes OR My Choices AND Paed* OR Child* OR

Young person OR Adoles*. The Preferred Reporting Items for Systematic Reviews and Meta-

Analysis (PRISMA) (Liberati et al., 2009; Stewart et al., 2015) guidelines were followed for

this review, in accordance with the process in similar reviews (Firn et al., 2016).

3.4.3 SELECTION CRITERIA

Studies were selected for review based on clear inclusion and exclusion criteria (see Table

2).

52

Table 2 – Inclusion and exclusion criteria for the systematic narrative review


Sources written in English.

Studies conducted at any location or place of care.

Studies including evidence about the engagement of young people (aged 13-24) in their own advance care planning.

Sources published between 1st

January 1990 and 31st October 2017.

Sources published before 1990 and after October 2017.

Sources focused on healthcare systems which include different decision-making processes than in the UK healthcare system.

Sources written in languages other than English.

Studies focused on advance care planning for adults (aged over 24 years) and children (aged under 13 years).

3.5 DATA EXTRACTION AND METHOD OF SYNTHESIS

The search strategy was adopted from similar previous research (Firn et al., 2016). The

approach adheres to the following narrative synthesis guidelines recommended by Popay

et al. (2006).

1. The first stage entailed conducting a preliminary analysis of the literature to identify

relevant sources. This was a two-step approach to identify and then screen the

literature:

53

i. Searches were conducted using the databases identified above to locate titles

and, where possible, abstracts, of studies containing the search terms. A list

of potential studies was generated to include in the synthesis. Studies which

did not meet the inclusion criteria were removed. This step of the process

identified 43 studies.

ii. Papers were screened to remove duplicates and articles which did not meet

the inclusion criteria, and the full text of the remaining 25 articles was

assessed for eligibility. Over 50% (n=15) of these papers were shared within

the research supervision team for independent eligibility assessment and to

increase the rigour of the study. Disagreements about study inclusion at each

stage of study selection were resolved through discussion within the research

supervision team. At this stage, inclusion and exclusion terms were checked

and grey literature was removed to ensure the robustness of the systematic

review.

2. The second stage was to explore the relationships between the results from the

studies. Data from the studies were extracted and presented in a Characteristics of

Included Studies table (Appendix 2), before being thematically analysed. This process

ensured consistency, clarity, and transparency within the data extraction and

management process. The selected characteristics were based on those identified in

previous research into ACPfYP (Robinson et al., 2012). The table included the

following information about each publication: study details; aims and objectives;

study design; participant characteristics; country; setting; key findings; theme(s) of

included papers; included/excluded, and quality assessment score.

54

3. Assessment of the robustness of the synthesis was carried out at each step of the

process.

A total of 22 articles met the inclusion criteria and were included in the narrative synthesis

(see Figure 3).

Figure 3 – PRISMA flow diagram

3.6 ASSESSMENT OF QUALITY

Hawker et al.'s (2002) assessment framework (Appendix 3) and scoring system (Appendix 4)

were utilised to assess the quality of the studies included in the synthesis. This systematic

approach mirrors that taken in previous similar studies where either palliative care research

55

was undertaken, a systematic narrative synthesis was conducted, or a combination of the

two was presented (Firn et al., 2016) The assessment framework allows literature to be

scored (9 very poor; 36 very good) to indicate the methodological rigour of each study

(Hawker et al., 2002). This scoring process gave a clear indication of the strengths and

weaknesses of each study and so provided clarity, transparency and rigour in the quality

assessment process (Hawker, 2002). No studies were rejected because of poor methodological

quality; all studies were included in the review.


Publication dates of the studies ranged from 2004 to 2017. Studies were heterogeneous,

with the majority being quantitative (n=15; Wiener et al., 2008; Lyon et al., 2013, 2014,

2017, 2009; Beringer and Heckford, 2012; Durall et al., 2012; Garvie et al., 2012; Lotz et al.,

2013; Heckford and Beringer, 2014; Jacobs et al., 2015; Dallas et al., 2016; de Broca et al.,

2016; Yotani et al., 2017; Freytag and Rauscher, 2017). Some utilised a qualitative method

(n=4; Christenson et al., 2010; Wiener et al., 2012; Lotz et al., 2015; Beecham et al., 2016),

and the remaining studies used a mixed methods approach (n=3; Lyon et al., 2004; Billings

and Holdsworth, 2013; Sanders and Robinson, 2017). The 22 studies included were primarily

from the US (n=14; Wiener et al., 2008, 2012, Lyon et al., 2017, 2009, 2013, 2014;

Christenson et al., 2010; Durall et al., 2012; Garvie et al., 2012; Lotz et al., 2013; Jacobs et

al., 2015; Dallas et al., 2016; Sanders and Robinson, 2017; Freytag and Rauscher, 2017), with

further studies coming from the UK (n=4; Beringer and Heckford, 2012; Billings and

Holdsworth, 2013; Heckford and Beringer, 2014; Beecham et al., 2016), France (de Broca et

al., 2016), Germany (Lotz et al., 2015) and Japan (Yotani et al., 2017). The remaining study, a

systematic review, included research from the US and Australia (Lotz et al., 2013).

56

Study settings included: children’s services/hospitals/clinics/medical centres (n=11; Lyon et

al., 2014, 2009, 2013; Christenson et al., 2010; Beringer and Heckford, 2012; Durall et al.,

2012; Garvie et al., 2012; Billings and Holdsworth, 2013; Beecham et al., 2016; Dallas et al.,

2016; de Broca et al., 2016); cancer centres/institutes (n=2; Wiener et al., 2008; Jacobs et

al., 2015); and universities (n=2; Freytag and Rauscher, 2017; Sanders and Robinson, 2017).

Other research was conducted within National Health Service (NHS) Trusts (Heckford and

Beringer, 2014); via a national board of haematologists (Yotani et al., 2017); and a range of

settings: care settings only (Lyon et al., 2014; Lotz et al., 2015); a combination of care and

non-care settings (Lotz et al., 2013); paediatric hospitals and HIV clinics (Lyon et al., 2017);

and a cancer institute and a university (Wiener et al., 2012).

Participants varied in their diagnosis: cancer and/or HIV/AIDS (n=9; Dallas et al. 2016; Garvie

et al. 2012; Jacobs et al. 2015; Lyon et al. 2009, 2013, 2014, 2017; Wiener et al. 2012; Yotani

et al. 2017), LLCs or LTCs (n=6; Beringer and Heckford, 2012; Durall et al., 2012; Lotz et al.,

2013; Heckford and Beringer, 2014; Beecham et al., 2016; de Broca et al., 2016);

chronic/severe/serious illness (n=3; Lyon et al. 2004; Wiener et al., 2008; Lotz et al., 2015);

and cystic fibrosis (n=1; Christenson et al., 2010). No specific condition was diagnosed in the

young people in the remaining studies (n=3; Billings and Holdsworth, 2013; Freytag and

Rauscher, 2017; Sanders and Robinson, 2017).

Similarly, young people’s knowledge of their diagnosis varied between studies: it was not

mentioned in half of the studies (n=11; Beringer and Heckford, 2012; Wiener et al., 2012;

Durall et al., 2012; Garvie et al., 2012; Billings and Holdsworth, 2013; Lotz et al., 2013, 2015;

57

Heckford and Beringer, 2014; Beecham et al., 2016; de Broca et al., 2016; Lyon et al., 2017);

young people were aware of their diagnosis in approximately a third of the studies (n=7;

Wiener et al., 2008; Lyon et al., 2009, 2013, 2014; Christenson et al., 2010; Jacobs et al.,

2015; Dallas et al., 2016); in a small number of studies (n=2; Lyon et al., 2004; Yotani et al.,

2017), at least some participants were aware of their diagnosis, while others were unaware;

and the young people did not have a diagnosed condition in the remaining studies (n=2;

Freytag and Rauscher 2017; Sanders and Robinson 2017).

All participants were English-speaking and, where race/ethnicity was acknowledged, they

identified across a range: Black; African-American; Hispanic or Latino; Asian; Black; White or

Caucasian; American Indian or Alaskan; Biracial; Asian or Pacific Islander. Educational

attainment and income level was mixed across those studies in which these factors were

identified (n=7; Lyon et al., 2009, 2014, 2017; Garvie et al., 2012; Dallas et al., 2016; Freytag

and Rauscher, 2017; Sanders and Robinson, 2017). The gender split between young people

was fairly equal in most studies.

3.8 THEMES

Analysis produced four themes: how ACPfYP works in practice; communication; training and

education; and relationships. The 22 studies are summarised in Appendix 5. Studies

generally covered multiple themes and only one study (Garvie et al., 2012) covered a single

theme. The theme(s) covered by each individual study are summarised in Table 3, and

summarised below.

58

Table 3 – Summary of the themes covered by each study for the systematic narrative review

Study author(s) and date of publication

Theme 1:ACPfYP in practice

Theme 2:Communication

Theme 3:Training and education of HCPs

Theme 4:Relationships

Beecham et al. (2016)

√ √

Beringer and Heckford (2012)

√ √ √

Billings and Holdsworth (2013)

√ √ √ √

Christenson et al. (2012)

√ √

Dallas et al. (2016) √ √

De Broca et al. (2016)

√ √ √

Durall, Zurakowski and Wolfe (2012)

√ √

Freytag and Rauscher (2017)

√ √

Garvie et al. (2012) √

Heckford and Beringer (2014)

√ √

Jacobs et al. (2015) √ √

Lotz et al. (2015) √

Lotz et al. (2013) √ √

Lyon et al. (2017) √

Lyon et al. (2014) √ √

Lyon et al. (2013) √ √ √

59

Lyon et al. (2004) √ √

Lyon et al. (2009) √ √ √

Sanders and Robinson (2017)

√ √ √ √

Wiener et al. (2008)

√ √

Wiener et al. (2012)

√ √

Yotani et al. (2017) √

3.8.1 THEME 1 – HOW ADVANCE CARE PLANNING FOR YOUNG PEOPLE (ACPFYP) WORKS

IN PRACTICE

The way ACPfYP works, and how those involved in the process want it to work, was the

most commonly recurring theme across the 22 studies (see Table 3). Families wanted their

child to be engaged in their own ACP and they wanted their child’s opinion to be heard

(Garvie et al., 2012; Wiener et al., 2012; Dallas et al., 2016). However, participation was not

always straightforward in practice. ACPfYP could be characterised by disagreements

between the family about the location of death (Jacobs et al., 2015). Conflict was sometimes

compounded by a reluctance of HCPs or parents to engage in ACPfYP if prognosis was poor

(Lotz et al., 2013; Beecham et al., 2016). These issues sometimes resulted in a breakdown in

relationships both within the family, and between the family and HCPs.

Decisions within the ACPfYP process were occasionally complicated by the unstable

condition of the young person. Parents generally desired care and treatment options to

remain open but evidence suggested ACPfYP was often started after a crisis situation or

when the health of the young people suddenly deteriorated (Lotz et al., 2015; Beecham et

al., 2016; de Broca v, 2016). One study concluded ACPfYP could take place from the time of

diagnosis (Lyon et al., 2004). Early initiation may empower young people and facilitate their

60

engagement in their ACP process regardless of perceived barriers (Lyon et al. 2004, 2014;

Sanders and Robinson 2017).

Although parents welcomed ACPfYP discussions, the timing of them often occurred too late

for their children to be involved (Beecham et al., 2016). The difficulty in predicting patient

outcomes created further complications, such as the communication of information to both

young people and their parents/carers (Heckford and Beringer, 2014). Specialist HCPs were

also more likely than other HCPs to both discuss ACPfYP and identify barriers to the

engagement of young people and their family (Yotani v, 2017). There was an additional

problem regarding the lack of information about resources to help guide ACPfYP discussions

(Jacobs et al., 2015).

Young people were reported to be concerned with practical issues, such as the treatment

they receive and anxiety for people who are left behind after their death (Wiener et al.,

2008). Yet young people were not always given the opportunity to participate in their ACP

despite wanting to be engaged (Lyon et al., 2014). Research also suggested 82% of parents

who have children with special healthcare needs want their child to participate in the

decision-making process (Lotz et al., 2013).

Few resources existed to aid ACPfYP in the US (Wiener et al., 2012). Chapter 2 identified

that resources for young people have more recently been developed in the UK by such

organisations as the NHS, TfSL, and the CYPACP. Effort should be concentrated on

continuing to developed relevant resources for different stages of the care pathway for

children with palliative care needs (Wiener et al., 2012). With the development of ACPfYP in

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the UK, this evidence is now in need of updating, together with the variety of ACPs for

young people, and the input from young people themselves.

3.8.2 THEME 2 – COMMUNICATION

The positive role of communication within the ACPfYP process was highlighted by over a

third of studies (n=8; Christenson et al. 2010; Dallas et al. 2016; Durall et al. 2012; Jacobs et

al. 2015; Lyon et al. 2009, 2013, 2017; Wiener et al. 2008). High-quality communication can

help young people understand the care they need and develop skills to convey their wishes

(Lyon et al., 2009, 2014; Christenson et al., 2010; Dallas et al., 2016; Yotani et al., 2016).

ACPfYP should be viewed as a process which recognises the shared vision and values of

different generations within the same family (Freytag and Rauscher, 2017). For example, a

generational approach to ACPfYP helped reduce death anxiety and so facilitated the

engagement of young people in their own ACP (Freytag and Rauscher, 2017). HCPs should

balance issues around hope for the future and respect for the individual, with honest and

meaningful conversations about dying (Christenson et al., 2010; Durall et al., 2012; Wiener

et al., 2012; Jacobs et al., 2015).

Despite their age, young people may be in the best position to discuss their own wishes, but

communication can often be a barrier to their engagement in ACPfYP (Durall et al., 2012;

Lyon et al., 2013, 2017). The reluctance, or discomfort, of HCPs to discuss EoL matters with

young people can be an additional barrier to their engagement in their own decision-making

process (Lotz et al., 2015). This breakdown in communication sometimes lead to a failure in

relationships, and highlighted inadequacies in training and education for HCPs (Durall et al.,

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2012). Therefore, training for professionals needs to be current, appropriate, and balanced

with ongoing peer support (Billings and Holdsworth, 2013).

ACPfYP may help initiate EoLC discussions (Heckford and Beringer, 2014), but there is little

evidence – and no qualitative evidence – to indicate how successful they are in engaging

young people, their parents/carers, and HCPs, from the point of implementation onwards.

Communication with young people may be particularly difficult because of the perception

that death is a taboo subject among younger patients (Wiener et al., 2012). However,

adolescents may have as mature an understanding of death as those aged eighteen or older

(Lyon et al., 2014; Lotz et al., 2015). Research indicated the majority (75%; n=17) of young

people felt it was beneficial to start EoL discussions early, partly because some of their

wishes may not be known to parents or HCPs (Jacobs et al., 2015). Either way, discussions

with young people and their parents/carers may help initiate ACPfYP and engage young

people in the process (Wiener et al., 2008).

A service evaluation undertaken by Billings and Holdsworth (2013) identified potential

confusion in communication between HCPs, patients, and families. Reliable results in this

study were produced by triangulating data within a mixed methods approach (document

audit of ACPs (n=18); interviews with families (n=4) about the process and outcome; and

focus groups with professionals (n=17) using the ACP) across three research sites (Billings

and Holdsworth, 2013). One limitation of this study was the poor response rate of parents

(4/10), which resulted overlooking the more in-depth views of participants. In contrast,

Wiener et al. (2008) concluded that ACPfYP can improve communication. Yet the smaller-

than-expected sample size of adolescents and young adults (n=20) meant statistical testing

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was not adequate. Furthermore, using surveys to collect data may have indicated general

opinions, but there was no opportunity to obtain an in-depth understanding of experiences.

The study by Wiener et al. (2008) is now in need of updating and may not be representative

of all patients because the study focused solely on patients with cancer or human

immunodeficiency virus (HIV).

Evidence suggested engaging young people in their own EoL decisions is advantageous and

that they would like to be involved in their own ACP (Wiener et al., 2012). Parents also do

not regret the inclusion of young people in EoL conversations, although the situation can be

challenging for HCPs (Beringer and Heckford, 2012; Garvie et al., 2012; Wiener et al., 2012;

Heckford and Beringer, 2014). However, there is a lack of research to ascertain the stage of

care when young people should be engaged. Clinicians in paediatrics care for dying patients

less frequently than do clinicians in adult care, and children’s needs are different from adult

neds, which can lead to a gap in knowledge and adequate training (Lotz et al., 2015; Yotani

et al., 2016). A lack of experience impacted on starting and maintaining effective

communication with young people on such a sensitive and personal topic. There is also an

opportunity to explore professional competency, which may help develop training tools and

ultimately help to move towards a multi-professional approach to ACPfYP and sharing best

practice (Wiener et al., 2008; Lotz et al., 2015).

Most studies conducted within hospitals and specialist centres identified communication as

one of the main factors impacting on the success of engaging young people in their ACP

process (Christenson et al., 2010; Dallas et al., 2016; Durall et al,. 2012; Jacobs et al., 2015;

Lyon et al., 2004, 2009, 2014; Wiener et al., 2008). As with the literature on ACPfYP in

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practice, many studies about communication were focused on ACP for adults. Research into

ACPfYP is emerging, and some of the issues, such as those concerned with training for HCPs,

may be transferable from adult ACP. However, ACPfYP may be complex because of the age

of the young person and the unstable nature of their condition, which indicates a gap in the

existing knowledge-base.

3.8.3 THEME 3 – TRAINING AND EDUCATION OF HEALTHCARE PROFESSIONALS (HCPS)

HCPs generally work at the desired pace of families and develop a flexible approach to

engage them in ACPfYP (Billings and Holdsworth, 2013). Access to relevant training can

enhance the quality of both communication and relationships of those in the ACPfYP

process. While education for young people can be key to raising awareness of ACPfYP,

access to, and availability of, training for HCPs, was identified as a possible barrier to

engaging young people in their own ACP (Durall et al., 2012; Jacobs et al., 2015; Sanders et

al., 2017). Unfamiliarity with relevant policies and uncertainty of responsibilities can impact

on the ability of HCPs to engage young people in ACPfYP discussions (Wiener et al., 2008;

Durall et al., 2012). Poor communication skills and unwillingness to discuss ACP with young

people were also identified as potential areas where HCPs can work to facilitate young

people’s engagement (Lotz et al., 2015). Clinicians have reported feeling ill-prepared and

inadequately trained to carry out aspects of ACPfYP conversations, such as resuscitation

(Yotani et al., 2016). Although the study Yotani et al. (2016) included the views of HCPs

(n=600), these professionals were limited to haematologists, and so missed the range of

other HCPs included in a multi-professional team. Furthermore, this study failed to consider

the attitude of young people and parents/carers in the ACPfYP process. Consequently, this

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study failed to draw firm conclusions regarding either the thoughts and opinions of the HCPs

or the engagement of families in the ACPfYP process.

Greater availability of training and guidance to support HCPs during ACPfYP have started to

address some of the issues identified above (Beringer and Heckford, 2012), but these need

to be ongoing to have a lasting effect (Beringer and Heckford, 2012; Billings and Holdsworth,

2013). Strategies such as surveys to stimulate conversations, and the consideration of real-

life situations, can facilitate sensitive communication at opportune times and engage young

people in their own care planning (Garvie et al., 2012; Sanders et al., 2017). Inter-

disciplinary HCP discussions can also help reduce professional tensions and potentially

facilitate the engagement of young people in their own ACP (Durall et al., 2012). However,

current research indicates that the opportunities to engage young people are not always

being seized (Durall et al., 2012).

The variation in ACPfYP documents being used around the UK can also contribute to

unpredictability in identifying training needs and support for HCPs (Billings and Holdsworth,

2013). Standardised documentation, processes, protocols, and guidelines can help ensure

information is easy to find and interpret (Billings and Holdworth, 2013). Yet there is little

research to explore the significance and effectiveness of documentation from the

experiences of HCPs in ACPfYP.

A systematic literature review concluded that young people and their parents/carers

wanted more information to help their decision-making (Lotz et al., 2013). Meanwhile, 82%

(n=76) of parents/carers whose children have special healthcare needs wanted their child to

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engage in the decision-making process (Lotz et al., 2013). Training and guidance for HCPs

can help enhance relationships between HCPs and parents/carers, but this can only happen

if communication is effective and training for HCPs is current, appropriate and balanced with

ongoing peer support (Billings and Holdsworth, 2013).

3.8.4 THEME 4 – RELATIONSHIPS

Age may contribute to tensions in relationships, and discussions can sometimes be

characterised by conflict because of the sensitive nature of the ACPfYP (Lyon et al., 2009;

Beringer and Heckford, 2012). A structured ACPfYP process may help reduce tensions by

providing a framework in which to discuss wishes openly and intimately while giving friends

and family members a clear role (Lyon et al., 2014; Freytag and Rauscher, 2017; Sanders et

al., 2017). Positive relationships within families, within the multi-professional team, and

between these groups, can create a sense of trust between young people, their family and

HCPs (Wiener et al., 2012). Developing such relationships necessitates a multi-professional

approach to facilitate the engagement of young people in ACPfYP and involve appropriate

HCPs (de Broca v, 2016). Peer support for HCPs can also enrich professional relationships

and complement the role of the family in ACPfYP (Beringer and Heckford, 2012; Freytag and

Rauscher, 2017).

Building trusting relationships is important in the ACPfYP process (Beecham et al., 2016).

Evidence stressed that quality relationships, based on mutual understanding, trust, and

respect, can help recognise the wishes of each person as valuable within ACPfYP (de Broca

et al., 2016; Freytag and Rauscher, 2017). Successful relationships also depend on

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developing effective communication and accessing relevant training (Wiener et al., 2008;

Durall et al., 2012; Lyon v, 2014).

Much of the previous research around relationships is based on anecdotal accounts or

previous literature (Hughes et al., 2018). The lack of rigorous research results in large

differences in how parents, HCPs and the young person perceive the illness and the care

provided (Hughes v, 2018). Opposing views can cause disagreements, which may result in

the young person receiving inadequate care and living in a poor quality environment at the

end of their life (Christenson v, 2010). These shortcomings can mean the young person may

experience significant fear through poor engagement, and not receive a good death (Lyon

et al., 2013, 2014). Nevertheless, the lack of up-to-date qualitative evidence to explore the

views and experiences of those within the ACPfYP process has so far hindered the

understanding of its implementation and use.

Conflicts around making decisions about EoLC can be uncomfortable for staff, and can

sometimes create a ‘culture of avoidance’ around ACPfYP (Lotz et al., 2015). Pressure on

staff and resources can also impact on the level of care provided, the standard of

communication, and the availability to participate in relevant training and development

(Lyon et al., 2014). However, there is no research to indicate the impact of conflicting

relationships and their effect on the use of resources during ACPfYP. This gap in the

knowledge needs to be filled to help examine engagement in the young person’s ACP

process and produce an original contribution to this area of knowledge.

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An understanding of a professional perception of ACPfYP is unclear. Research by Lyon et al.

(2013) used a randomised control trial with young people (n=60) and their family or

surrogates. Further research into the role of HCPs is needed to understand how these roles

develop and evolve during the ACPfYP process. Many previous studies are too focused on

the clinical side of engagement, such as exploring the role of HCPs when implementing

ACPfYP. Therefore, research evidenced good practice but failed to embody the whole nature

of planning care for young people. Current literature therefore provides a mixed view of

whether relationships within the process of ACPfYP are more of a barrier or a facilitator to

implementation and use.

Five studies (Lyon et al., 2009, 2014; Wiener et al., 2012; Freytag et al., 2017; Sanders et al.,

2017) established effective relationships within ACPfYP were characterised by openness and

honesty, plus age-appropriate language and communication style. These factors were

central to successfully engaging young people in their ACP. Evidence also recognised ACPfYP

is a complex process, and the availability of training for HCPs is crucial to both help

understand these complexities and overcome potential barriers (Sanders et al., 2017).


The literature indicates a number of barriers and facilitators in ACPfYP. Poor timing of

ACPfYP can explain why decisions about the future of young people rarely involve the young

people themselves, despite the willingness to engage them (Beecham et al., 2016). A

shortage of knowledge about ACPfYP for young people can also be a barrier to their

engagement by impacting on their ability to make informed decisions about treatment, care

or place of death (Jacobs et al., 2015).

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Better engagement of relevant individuals in the ACPfYP process is thought to lead to better

health outcomes (Lyon et al., 2014). However, there is still no clear indication of the optimal

timings of ACPfYP discussions. Insufficient research also discussed the role of different HCPs

and it is not possible to draw conclusions from the evidence. Nevertheless, a team with

more experience of working with young people may help facilitate a more positive

experience of ACPfYP (Billings and Holdsworth, 2013). There now needs to be further

research to identify the communication experiences of all HCPs when implementing ACPfYP.

There is a variety of documentation and inconsistent engagement of young people between

different services (Beringer and Heckford, 2012; Billings and Holdsworth, 2013). Conversely,

a structured ACPfYP intervention, targeting positive relationships and effective

communication (Lyon et al., 2009, 2017), can facilitate young people’s participation in their

own care planning and contribute to the reduction of both stress and anxiety (Lyon et al.

2009, 2014, 2017).

Poor, and incorrect timing of, communication can cause unnecessary tension (Lyon, 2004)

and be a barrier to young people’s engagement in their ACP process (Lyon et al., 2004;

Garvie et al., 2012). However, there is potential to foster effective communication about

ACPfYP within families (Wiene et al.r, 2008; Freytag and Rauscher, 2017). Communication,

which is clear and timely, and language, which is both age- and developmentally-focused,

can facilitate the engagement of young people by helping them understand, and convey, the

care they want at the end-of-life (Christenson et al., 2010; Lyon et al., 2009, 2014; Yotani et

al., 2017). Honest and open communication may also facilitate the engagement of young

70

people (Freytag and Rauscher, 2017; Lotz et al., 2015). Additionally, a proactive approach to

communication may potentially remove barriers to engagement, and provide a calmer and

less stressful environment to discuss needs and wishes (Lyon et al., 2014).

Training to enhance professional knowledge and understanding of relevant policies and

legislation, and specifically communication training, can facilitate the engagement of young

people in their own ACP (Durall et al., 2012; Jacobs et al., 2015). Training can help raise

awareness of ACPfYP and highlight the role of HCPs in engaging young people in ACP

discussions (Durall et al., 2012; Sanders et al., 2017). Access to training can therefore be

understood as a potential facilitator to introduce conversations about ACPfYP, and ease

worries and concerns of those involved in the process (Durall et al., 2012). There is currently

little evidence to show that training for HCPs is consistent (Lyon et al., 2008; Billings and

Holdsworth, 2013). Consequently, availability and access to training may act as more of a

barrier to engaging young people in their own ACP (Beringer and Heckford, 2012).

Assumptions basing young people’s understanding of ACP on their age can be a limiting

factor to their engagement in ACPfYP (Freytag and Rauscher, 2017). Relationships

characterised by openness and honesty, plus suitable communication style, also acted a

facilitator to engaging young people in their own care planning. Constructive, encouraging,

and progressive relationships can allow ACPfYP to flourish and facilitate the engagement of

young people in their own ACP; negative, pessimistic and difficult relationships can be more

of a barrier to their engagement.

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Despite the barriers identified, there were also encouraging signs where young people had

been engaged. For example, the alignment of practice and policy, whereby HCPs felt

guidance was provided to facilitate the engagement of young people and start difficult

conversations, can help young people develop skills to convey their own care treatment

decisions and develop their resilience (Wiener et al., 2012). A collaborative approach to

ACPfYP would further increase the potential for compassionate and self-directed care,

comfort and support both before and after death (Wiener et al., 2012).

3.6 LIMITATIONS

There are several limitations to this review. A narrative synthesis is aimed at, and supports,

the combination of heterogeneous studies, but the varied nature of the studies can make it

difficult to synthesise the information. Therefore, a potential for bias by over-representing

one or more studies, or themes, remains a possibility. Variety in key terms and definitions in

the literature used to refer to ACPfYP made searching for articles and discussing the

engagement of young people in the process, a challenging task. The relatively small amount

of available literature also made the review additionally complicated. For example, some

studies focused on parents’ or HCPs’ perception of the engagement of young people rather

than focusing on the views of the young people themselves. Indeed, no study focused on

the views and experiences of young people within the ACP process. Responses from

different groups within ACPfYP were also sometimes combined, which made it hard to

differentiate individual viewpoints. Furthermore, some studies included in the review

formed a ‘study cluster’, where a single study comprised multiple, smaller studies (Booth et

al., 2013). Study clusters provide depth of understanding for the context and

implementation of ACPfYP and have been balanced with other findings in this review (Booth

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et al., 2013). This depth is particularly important when researching complex interventions

and establishing their effectiveness (Booth et al., 2013). However, there may also be

limitations in providing a full breadth of understanding around ACPfYP (Booth et al., 2013).

Each study has been individually assessed and only those studies which met the criteria for

this synthesis have been included. As a result, previous publications were not included if

they did not meet the criteria. This is an inherent limitation of qualitative assessment

frameworks and represents a potential bias in the scoring of included studies. Furthermore,

the scoring of the studies was independently undertaken and disagreements were discussed

within the research supervision team. This process provided transparency and rigour but

also may have created potential bias in the scoring of included studies.

While qualitative methods may be better suited to answering questions of perception, such

approaches also have limitations. A key factor of the studies included in this review is the

limited focus of some of the research. Nearly a quarter of studies (Lyon et al., 2004; Wiener

et al., 2008; Beecham et al., 2016; de Broca et al., 2016; Sanders v, 2017) were limited to

single institutions where data saturation may not be achievable. Nevertheless, these

qualitative studies were useful to address the review question, and their results were

helpful to understand reported practice.

Furthermore, studies inevitably varied in quality. Factors which negatively impacted on the

quality of research included: a lack of clarity in their aim(s) (Christenson et al., 2010; Billings

and Holdsworth, 2013; de Broca et al., 2016); a poor description of data collection and

sampling methods (Ch et al.ristenson, 2010; Beecham et al., 2016); incomplete analysis of

data (Wiener et al., 2008, 2012; Christenson et al., 2010; Beringer and Heckford, 2012;

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Heckford and Beringer, 2014; de Broca et al., 2016); poor consideration of ethical issues

(Wiener et al., 2008; Christenson et al., 2010; Beringer and Heckford, 2012; Durall et al.,

2012; Heckford and Beringer, 2014; Jacobs et al., 2015; Beecham et al., 2016; de Broca et

al., 2016; Freytag and Rauscher, 2017); and a lack of generalisability or discussion of

implications for policy and practice (Christenson et al., 2010; Jacobs et al., 2015; de Broca,

et al. 2016; Yotani et al., 2016). Nevertheless, only a minority of papers (n=4) (Christenson

et al., 2010; Heckford and Beringer, 2014; Jacobs et al., 2015; de Broca et al., 2016) were

judged either as poor or very poor in overall quality. Although this review identified

available literature, existing research is not necessarily representative of the current

engagement of young people in their ACP. Consequently, more research is needed in this

area. Research is also needed to investigate the experience and involvement of all

participants (young people, their family, and HCPs) in ACPfYP.

3.7 STRENGTHS

Despite the limitations, the included studies and synthesis approach satisfactorily answered

the review question. There was a potential for bias because of my position as an insider in

this stage of the study (see page 93 for a more in-depth consideration of the insider and

outsider discussion), but this was minimised as the procedure was checked at each stage by

the research supervision team. This process reduced the potential for bias and ensured the

review was conducted rigorously and is replicable. Utilising an identifiable and tested

approach to the synthesis further strengthened the reliability of the results. The rigour of

the literature search resulted in the comprehensive identification of relevant studies.

Inclusion of all applicable studies in the synthesis allowed a broad and full understanding of

the phenomenon under review. Even with the heterogeneous nature of the studies, the

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findings appear similar. Most of the studies were conducted in the US, and in hospitals or

other institutions, but the overall congruence between studies gives encouragement

regarding the strength of the findings and their applicability to a variety of settings.

3.8 THE SIGNIFICANCE OF THE FINDINGS

With reference to the aim of this research study, there can be a variety of people involved in

the process of ACPfYP: parents/carers, different HCPs and, sometimes, young people

themselves. The engagement of young people in their own ACP seems to be something

desired by all participants in ACPfYP, but appears to be inconsistent in practice.

Current research about ACPfYP indicates differing experiences for those involved. The

congruence of policy and the aims of ACPfYP are necessary to facilitate this engagement

but, too often, these factors do not work together effectively. There are also various

potential barriers to young people’s engagement in their ACP, such as poor communication,

conflict within relationships of those involved in the process, and inconsistent training for

HCPs. Conversely, these factors can also be facilitators to engaging young people when their

importance is recognised, and time and resources are invested into their effective use.

Specialist HCPs may be in the best position to identify these factors and take advantage of

them (Yotani et al., 2017), but more research is needed to confirm this. Consequently, there

is no general agreement of when it is best to introduce ACPfYP discussions. Only two studies

identified an optimal time to start ACPfYP and both agreed that it is best introduced at

diagnosis. With no further investigation of the timing of ACPfYP, this represents a gap in

current knowledge.

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A weakness with existing research is that it does not reflect the experiences of using ACPfYP

from multiple perspectives. Similarly, it fails to identify the barriers and facilitators to

engaging young people in their own ACP (Karver and Berger, 2010; Hughes et al., 2018).

Correspondingly, there is a lack of research to explore the views and experiences of the

young people themselves as part of the process of ACPfYP (Hughes et al., 2018). Current

literature may also not stand up to academic rigour because of poor study design or bias

towards positive results, which has arguably led to a lack of evaluation of ACPfYP (Lund et

al., 2015). The absence of an evidence-base significantly weakens the development of

clinical guidance (Together for Short Lives, 2016). Consequently, more detailed, high-quality

research is needed to understand the extent of the barriers to young people’s engagement

in their own ACP, and how to facilitate their involvement in the process.

3.9 CHAPTER SUMMARY

This chapter presented a systematic narrative synthesis of the engagement of young people

in their own ACP. Although qualitative literature exists, crucially no previous studies have

been identified relating to the concurrent experiences of young people, their

parents/carers, and HCPs, as part of implementing ACPfYP. Furthermore, the barriers,

facilitators, and opportunities these participant groups face during implementation of

ACPfYP have not been identified.

Chapter 4, Methodology, will present and rationalise the methodological considerations and

philosophical perspective that underpins this study. The use of semi-structured interviews

within case study methodology will be justified, and the ethical considerations and approach

for data analysis will be presented.

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CHAPTER 4 – METHODOLOGY4.1 CHAPTER INTRODUCTION

The previous chapter identified the shortage of qualitative research focused on the

engagement of young people in their own ACP, and confirmed the need to conduct research

which explores ACPfYP from the different perspectives of all involved in the process

concurrently.

This chapter sets the scene for the study by presenting the research focus, the

methodological and philosophical considerations, and the ontological and epistemological

standpoint of the researcher. Justification will be provided for adopting a qualitative

approach to the study, and a rationale will be given for using case study methodology. The

methodological limitations and insider role of the researcher are discussed. A summary

brings together the main points of this chapter.

4.2 RESEARCH DESIGN

A research design is a logical plan for getting from one stage to the next in the research

process (Yin, 2014). The process includes identifying the significance of the research topic

and formation of the research questions through to the selection of a suitable research

methodology and collection and analysis of data (Polit et al., 2001; Zucker, 2009; Yin, 2014).

There are four elements of research design: epistemological position, theoretical

perspective, methodology, and method (Crotty, 1998). Epistemology and the theoretical

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stances, and the methodology adopted for this study, will be outlined below. The method

will be outlined in the following chapter (Chapter 5). Having a detailed research design is

important because the success of a research study is significantly improved when different

stages of research are properly defined. A clear design also provides a basis for the research

study and ensures the research components fit together coherently. Coherence in the

design can also contribute to a rigorous research process and produce a greater

understanding of the data (Zucker, 2009; Easton, 2010). To this end, the research focus and

philosophical standpoint will be outlined below.

4.3 RESEARCH FOCUS

The purpose of this research is to build on the relevant key themes, and fill key gaps in the

existing literature, which were identified in the previous chapters (Chapters 2 and 3). The

study will provide new insights into the views and experiences of all involved in initiating

and implementing ACPfYP. This research focus will include identifying optimal timing of

introducing ACPfYP, and the barriers and facilitators to involving young people in their own

ACP. The study will help to inform practice, and so enhance existing models of care to

facilitate engagement of young people.

4.4 ONTOLOGY AND EPISTEMOLOGY

Ontology and epistemology are important to underpin the research process, appreciate the

adopted approaches for methodology and method, and understand the rationale for data

analysis (Grix, 2002; Marsh et al., 2018). Philosophical viewpoints contextualise the

methodological approach for the research, and so it is important to understand these

positions (Grix, 2002). Therefore, the ontological and epistemological standpoints are

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presented below and the research design will then be explored. Justification for the chosen

methodology will be provided.

Ontology relates to understanding the nature of reality, whereas epistemology is concerned

with how knowledge about that reality can be obtained and understood (Holden and Lynch,

2004). Recognising and explaining these orientations is important because they signify a

belief in either a subjective or an objective position to undertake the research (Holden and

Lynch, 2004). Clarifying these positions will inform the chosen research strategy.

4.4.1 ONTOLOGY

4.4.1.1 Subjectivism and realism

An objective view of the world utilises a positivist stance and is generally based on the

assumption that reality is a concrete structure which is waiting to be discovered (Holden

and Lynch, 2004). Conversely, a subjective view of the world understands reality as more of

a social construction where people interact and influence their surroundings rather than

simply respond to their environment (Holden and Lynch, 2004).

A subjective approach was adopted for this study because it helps establish participants’

understanding of the world and so recognises the importance of subjective human meaning

and experience (Baxter and Jack, 2008; Bracken, 2010). Furthermore, reality is not an

objective entity that fits neatly into research, but there are instead multiple realities which

are best represented from a subjective position (Yazan, 2015).

A subjectivist approach respects imprecise differences between people, while objectivism

(positivism) searches for fixed and quantifiable answers to questions (Grix, 2002). Positivism

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does not recognise social construction but explains events within a structured, determined

world (Porter, 2007; Fleetwood, 2013). Alternatively, idealists, through a subjective

ontology, believe the world is socially constructed and there is no fixed reality; perception

of the world is based wholly on individual observations and constructions (Fleetwood,

2013). Between these two opinions is the realist perspective.

Realists believe relationships between people, and the perceptions of these relationships,

are influenced by external structures and internal subjective beliefs: description of reality

exists on different levels and is influenced by internal and external processes (Proctor,

1998). Realists view objects as irreducible (Drabble et al., 2013), and understand the

personal nature of reality ‘is not a world that one perceives or constructs but one’s own

world’ (Sacks 2012: 129). The realist approach also recognises causal events in the world,

the effects of which vary depending on the context (Porter, 2007). While positivism is

beneficial for some research, such as the concept of children’s agency in healthcare

(Montreuil and Carnevale, 2015), it was not appropriate for this study because its defining

feature,

‘implies that there exist regularities or law-like generalisations in material or social settings that provide the basis for both explanation and prediction’ (Easton 2010: 188).

Such predictions in ACP are inaccurate and therefore may be more of a challenge in ACPfYP

(Abel et al., 2013; Heckford and Beringer, 2014). As a consequence, the determinate, causal

approach of a positivist standpoint (Porter, 2007) would be of little use to understand the

nature of individual personal views and experiences within ACP processes. As exploring

different perspectives was the focus of this study, a more suitable stance was a realist

position because of the need to recognise personal meanings of the individual components

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within the process of implementing and using ACPs.

4.4.1.2 Critical realism

Critical realists believe aspects of the world exist independently from individual

interpretation, and so incorporate the individual and constructivist components of idealism

(Maxwell, 2010). In this way, critical realism helps maintain the reality and knowledge of

objects and also encompasses the situated nature of this knowledge to develop an

understanding of reality and social structures. Therefore, critical realism can help interpret

how social structures operate (Cruickshank, 2012). Maxwell (2010: 5) stated:

‘Critical realists…retain an ontological realism (there is a real world that exists independently of our perceptions, theories, and constructions) while accepting a form of epistemological constructivism and relativism (our understanding of this world is inevitably a construction from our own perspectives and standpoint).’

Critical realism was adopted for this study because the iterative process of ACP reflects the

need for ongoing communication to express healthcare values and goals (Ahluwalia et al.,

2015; Zadeh et al., 2015). Critical realism also recognises the multi-layered, emergent, and

transformational nature of iterative processes (Fleetwood, 2013).

ACP requires ongoing support for parents/carers and HCPs, as well as for young people due

to their complex medical conditions (Seymour et al., 2010; Patel et al., 2012; Benini et al.,

2013; Noyes et al., 2013; Together for Short Lives, 2013). Support needs are further

apparent in the development of relationships between everyone involved in ACP, as well as

subsequent ongoing discussions (Harrington Jacobs, 2005; National Health Service South

East Coast Clinical Senate, 2014). The critical realist standpoint allows everyone within ACP

discussions to be recognised (Easton, 2010). The connection between critical realism and

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the literature is important because the themes in the literature identify the complexity

within ACPfYP in terms of communication, relationships, and associated practical issues such

as multi-professional working (TfSL 2002; Mitchell and Dale 2015). Therefore, critical realism

was useful to facilitate an exploration of the views and experiences generated by different

people as ACPfYP is implemented and used.

Furthermore, critical realism helps describe the causes of these processes using the

language, procedures, and explanations participants routinely adopt (Easton, 2010). This

view acknowledges that processes of implementing ACP are flexible and can adapt to

changing circumstances (Lotz et al., 2015). Therefore, critical realism will help explore

meanings and intentions within the ACP process by focusing on the causality, processes, and

conditions between events rather than simply identifying that one event simply follows

another (Maxwell, 2010; Zachariadis et al., 2013). Understanding the causal links between

different influencing factors within the iterative ACP process is key to determining what is

needed to provide care.

4.4.2 EPISTEMOLOGY

The two broad approaches to epistemology consist of constructivism and interpretivism

(Easton, 2010; Maxwell, 2010). Constructivism advocates social phenomena and meanings

that are being constantly created and revised by people in different social interactions (Grix,

2002). Although constructivism has been advocated as a viable approach to case study

methodology by Stake (1995) and Merriam (1998), it is generally assumed to be a problem-

solving approach (Ultanir, 2012). The assumption that constructivism produces solutions can

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result in a greater variety of data, with the data being less easy to classify, than if using

other research methods (Marsh et al., 2018). The multiple realities recognised by

constructivism can help understand the intentions and meanings behind communication

but, in doing so, ignores the context of communication. Thus, constructivism is simply able

to determine vague possibilities about the meaning of communication, which is further

prejudiced by the standpoint of the researcher (Mertens, 2010). Constructivism risks

negating any advantage gained from understanding participants’ interaction with their

social world. Therefore, the constructivist approach was considered unsuitable for this

study. Instead, there should be ‘interpretivist authority’ when researching the views of

young people (Carter and Ford, 2013).

Interpretivism stems from the need to understand an action and the ‘causal explanations of

its cause and effects’ (Weber 1947: 88). By doing so, interpretation becomes a ‘value-

interpretation’ whereby the researcher understands the content of the information in order

to suggest relationships of the information to values (Weber, 1949). The process of

interpretation involves an evaluative judgement by the researcher (Weber, 1949). In turn,

this judgement leads to an interpretation of the understanding ‘for clarity and verifiable

accuracy of insight and comprehension’ (Weber 1949: 90). As a consequence, interpretivism

emphasises meanings and motives within human interactions (Chowdhury, 2014).

Interpretivism helps make sense of opinions rather than over-riding them with pre-formed

analysis to solve the researcher’s questions. Complementing the explorative, inductive,

theory-building approach, interpretivism emerges from a critical realist position (Easton,

2010). Therefore, an interpretive approach provides the theoretical framework for this

study.

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An interpretive perspective was appropriate to recognise that the ‘realm’ of ACP can be

understood by seeing the same data from different positions (Easton, 2010). This

perspective helped understand the iterative process of ACP while seeking to understand the

specific contexts of the phenomenon (Carson, 2001; Ahluwalia et al., 2015). As

interpretivism ‘views the world as a multiplicity of realities,’ it takes into account the

individual perceptions, understandings and experiences from which this reality is

constructed (Salazar et al., 2015: 211). Therefore, interpretivism helped contextualise the

experiences of different groups within the ACP process: young people (see, for example,

Hammes et al., 2005), parents/carers (see, for example, Lotz et al., 2013), and HCPs (see, for

example, Ahluwalia et al., 2015; Foster et al., 2013). This epistemological viewpoint also fits

well with Fleetwood's (2013) concept of critical realism as it recognises multiple

interpretations of a single reality, and, so within this process, can help uncover both power-

knowledge and socio-political relationships. Similarly, an interpretivist position helps

‘understand the particular, contributing to building a framework of “multiple realities,”’ and

so is appropriate when using a case study approach (Thomas 2013: 11). Comprehending

these different concurrent experiences and views within the iterative process of ACPfYP was

one of the gaps identified in the literature, and one of the contributions of this study to both

the existing knowledge-base and existing models of care.

4.5 METHODOLOGICAL APPROACHES

A number of research approaches are available, including quantitative, qualitative, and

mixed methods design (Creswell, 2003). In its simplest form, the fundamental difference

between quantitative and qualitative research is a distinction between the collection of

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numerical data in quantitative studies, and verbal and textual data in qualitative studies

(Porter, 2007). Quantitative research places an emphasis on rationality and objectivity, and

is understood as a descriptive statement about the way the world is (Pathak et al., 2013).

Quantitative research usually points to an objective worldview in an attempt to explain

cause and effect (Sukamolson, 2007). The collection of data through a quantitative

methodology is of limited value for this study because numerical data does not recognise

the depth of attitudes, values, and opinions of participants (Sukamolson, 2007).

Furthermore, a quantitative methodology does not allow for gathering data around

participants’ individual circumstances, personalities, and personal experiences of ACPfYP

(Winter, 2000). Furthermore, a quantitative approach does not fit with an explorative study,

or the subjective and interpretivist ontology and epistemology outlined earlier in this

chapter. Quantitative research is restricted to generalisations that are common to all

phenomena and does not recognise specific examples of human behaviour and experiences

(Winter, 2000). A quantitative methodology produces a lack of rich data, resulting in an

incomplete understanding of the views and experiences of research participants. Therefore,

the disadvantages of using a quantitative approach for this study outweigh the benefits of

collecting precise data using such a relatively unobtrusive methodological framework (Tellis,

1997).

In contrast, a qualitative methodology collates and interprets non-numeric data and allows

for the investigation of complex phenomena within their contexts (Baxter and Jack, 2008;

Pathak, 2013). Recognising these multi-faceted and complex contextual factors is important

for understanding the implementation and use of ACP, and helps produce rich contextual

data to reflect participants’ experiences of ACPfYP (Russell, 2014; Mitchell and Dale, 2015).

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The opportunity to collect data using a qualitative framework is one of the richest

approaches to data collection: a qualitative methodology not only allows participants to tell

their stories, but also enables the researcher ‘to gain an understanding of the richness of a

personal event and the factors surrounding it’ (Jack, et al. 2010: 5). Therefore, a qualitative

approach results in a research experience which is both powerful and emotive because it

searches for meanings and experiences of participants (Winter, 2000; Jack et al., 2010).

Understanding the views and experiences of different participants further recognises the

basic commitment of qualitative researchers to describe or explain aspects of the world

(Porter, 2007). Therefore, a qualitative methodology allowed for individual experiences of

young people, their parents/carers, and HCPs to be acknowledged and interpreted in line

with the epistemological approach outlined above.

The methodology of a study is directly influenced by the philosophical implications of a

research question (Crotty, 1998). The questions of ‘how?’ and ‘why?’ are central to

explorative studies (Yin, 2014). These questions refer to identifying a set of causal links

about ‘how’ or ‘why’ something happened (Baskarada, 2013). Quantitative methodology is

of limited use to answer these questions and discover these missing links. Instead, they are

better answered using qualitative research techniques (Bernard and Ryan, 2010). Secondly,

exploratory studies are more suitably conducted using case studies because they investigate

the relationships that are proposed between different theory components (Yin, 2014). The

literature critique in previous chapters highlighted a lack of current research exploring the

views and experiences of parents/carers and HCPs using ACPfYP, as well as a limited

representation of the views and experiences of the young people themselves (Sanderson

and Woolfe, 2014; Bergstraesser et al., 2015). Adopting a qualitative approach can help

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rectify this gap and sits comfortably with the adopted epistemological position. Therefore, a

qualitative methodology was chosen as an appropriate approach for this study.

Different qualitative approaches were considered to determine the best strategy to elicit

data in line with the chosen ontological and epistemological perspectives. Qualitative

health-related research often utilises ethnography, grounded theory, phenomenology, or

case study methodologies (Creswell, 1998). Different qualitative options are outlined below

and justification for the chosen methodology is presented.

4.6 METHODOLOGICAL APPROACHES CONSIDERED

Ethnography was considered as a viable methodology because it is concerned with cultural

beliefs and values in people’s lives (Wall, 2015) and therefore would fit with those involved

in the implementing ACPfYP in their naturally occurring settings. An ethnographic method

could help understand the individual significance of social interactions (Brewer, 2000).

However, human attitudes are not considered during observational research so this

approach was discounted because its use risked omitting human opinions and influences on

decision-making within the ACP process (Yin, 2014). Furthermore, the time required to

conduct observations in order to build up a picture of ACP would be impractical (Yin, 2014).

Additionally, the researcher’s non-clinical background was likely to hinder the researcher as

an observer in such a sensitive environment. Due to the research aim of exploring individual

views and experiences within the ACP process, more fitting methodologies were required to

meet the ontological and epistemological standpoint.

Interpretative Phenomenological Analysis (IPA) was considered as a methodology because

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its approach allows considerable freedom to gather and analyse data (Pringle et al., 2011).

Greater flexibility and independence can aid the understanding of how participants’ lived

experiences help them make sense of the meaning of the ACP as a phenomenon. IPA can

also help explore the processes rather than the outcomes of ACPfYP, and may have allowed

the researcher to draw on personal experiences to aid interpretation (Brocki and Wearden,

2006). However, Brocki and Wearden (2006: 88) argued that IPA emphasises ‘the processes

through which participants make sense of their own experiences,’ and this hermeneutic

approach detracts from the formulation of objective accounts. This interpretative focus also

meant it would have been difficult to apply generalisations to the data of such a unique and

specific group of participants as needed for this study (Pringle et al., 2011). The emphasis of

IPA is on interpretation, but in doing so it can ignore an in-depth understanding of the

experiences of participants within the process of ACPfYP, and therefore was ultimately

discounted.

4.6.1 CASE STUDY METHODOLOGY

Case study is concerned with the investigation of a contemporary phenomenon within a

real-life context where the boundaries between these two are blurred (Yin, 2014). The study

of behaviour and processes allows the investigation of holistic and meaningful

characteristics of real-life events (Yin, 2014).

A crucial aspect of this study was to understand the experiences that inform the initiation

and use of ACPfYP. The principles of case study methodology lend themselves to including

numerous strategies that promote data credibility or ‘truth value’ (Baxter and Jack, 2008:

556)

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(Baxter, 2008). In other words, opportunities for the triangulation of data sources and

multiple research sites in this study would support the principle in case study research that

the phenomena should be viewed and explored from different perspectives (Baxter and

Jack, 2008). To explore something from various perspectives it is necessary to collect

numerous sources of evidence (Yin, 2014); in this study these are from the young people,

their parents/carers, and the HCPs involved in the ACPfYP implementation process.

Furthermore, triangulation is achieved not only by conducting interviews but also by

examining a young person’s ACP, and by keeping a reflective diary of the data collection

stage of the research study. Triangulation of different sources helps maintain the validity of

the study by corroborating findings from interviews and providing greater depth to data

analysis (Johansson, 2003; Yin, 2014).

4.7 RATIONALE FOR THE ADOPTION OF CASE STUDY METHODOLOGY

Case study methodology was considered as a suitable methodology for this study because it

can be used in real-life situations where there will not be any control over the

implementation of ACPfYP (Yin, 2014). Case study methodology also supports a more

detailed investigation through an exploratory approach to build theory and in-depth

understanding (Rowley, 2002; Yin, 2014). This methodological approach is beneficial for

helping provide causal-explanatory accounts in their natural, real-life settings, such as

healthcare, business, and policy to better understand how they works and what happens

during implementation (Rowley, 2002; Crowe et al., 2011; Fleetwood, 2013; Yin, 2014).

Intensive exploration can help understand and explain the implications of policy initiatives

or developments in practice (Crowe et al., 2011). Case study is particularly suited to

understanding the workings and effectiveness of complex modern ‘mega-systems’ in

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healthcare (Yin, 1999). The flexibility afforded by case study methodology also made it a

suitable approach by helping provide insights into related fields such as organisational

structures (Yin, 1999). An in-depth methodological approach is better to provide an

explanation for such processes, and develop an understanding of them through a narrative

account of ACPfYP (Yin 2012; 2014). The exploratory nature of the study also helps improve

external validity by increasing the opportunity of statistical generalisation, where results can

be applied to a whole population (Yin, 2014). In many ways, this flexible approach also

incorporates Stake's (1995) interpretivist views of understanding the case as a complex

phenomenon within a given set of circumstances.

Furthermore, the qualitative, explorative design helped understand a person’s unique,

dynamic and holistic character within ACPfYP (Mouton and Marais, 1990). As the research

was not limited to a single organisation, it was conducted using a multiple case study

approach (Yin, 2009). Building case studies can potentially be time-consuming, but a

multiple-case study design can produce more compelling evidence than can a single case

study strategy, and therefore create a more robust piece of research (Yin, 2014). Case study

methodology was also compatible with the chosen ontological and epistemological

approaches:

‘Critical realism is particularly well suited as a companion to case study research. It justifies the study of any situation, regardless of the numbers of research, but only if the process involves thoughtful in-depth research with the objective of understanding why things are as the way they are.’ (Easton, 2010: 119).

A holistic case study methodology was considered appropriate because it recognises the

inseparable interrelationship between the case and its contexts (Yazan, 2015). This

methodology was also suitable for an apprentice researcher as the design provides the best

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mechanism to answer the research question (Yin, 2014). As there is only one unit of

analysis, the case, a holistic design is also a better fit to meet the research aims (Yazan,

2015).

This research is a judicious, robust study, and case study methodology will help answer the

research question using a thorough approach. Rigorously planned case study methodology

helps develop trust with a credible research strategy, and assure both validity and reliability

(Yin, 2009). By keeping these steps as operational as possible and ensuring the researcher is

answerable for his actions to participants and the research supervision team, the reliability

and rigour of the study is increased (Yin, 2009; Atlasti, 2015).

Furthermore, this is an original study design which has been rarely used to explore ACP,

with existing literature also indicating the lack of current research involving all three

participant groups concurrently. The additional element of involving young people in this

type of research highlights the challenging nature of this topic and also helps explain the

lack of existing research around ACPfYP. The case studies are intended to become

instrumental in purpose (Baxter and Jack, 2008; Thomas, 2011). For this study, the

instrument is to inform future practice and models of care by providing an insight into the

processes of implementing and using ACPfYP. These factors are important because it was

recognised that past mistakes associated with the LCP are at risk of being repeated in other

areas of EoLC (Lintern, 2015). This study aims to identify some of the current issues

associated with ACPfYP to help minimise these risks.

With reference to the minimum number of cases needed to make a viable study, there is no

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correct answer (Yin, 2009). This methodology can be useful to investigate one case or a

small number of cases (Thomas, 2011). The number of participants in similar previous

research within healthcare has ranged from four (Hechter et al., 2008) to sixteen (Hammes

et al., 2005). A multiple case study design has comprised up to nine cases or as few as a

single case (Walshe et al., 2004). Accordingly, it was anticipated between five and seven

cases were needed to produce a viable study. This figure corresponds with research which

explored the views of multiple participants: patients, carers, practitioners from health and

social care agencies, their managers, and purchasers (Cowley et al., 2001; 2002).

4.8 STRENGTHS AND LIMITATIONS OF CASE STUDY METHODOLOGY

While case study methodology can be criticised for simply being the prelude to more

rigorous inquiry, a thoroughly-planned research design can overcome these criticisms (Yin,

2009). Case study methodology goes beyond the exploratory research of other approaches

to help provide an understanding of why things happen. The methodology is a rigorous

approach because the number of cases allows for rich data and in-depth analysis within the

clear boundaries of the research design, and there are opportunities to gather data from

different sources (Baxter and Jack, 2008; Baskarada et al., 2013; Yin, 2014). Therefore,

valuable data can be added to the existing research base. The criticism that case study

research might lack the potential for generalisation of findings is likewise true of all social

research; the difference is that case study methodology brings together a variety of sources

to support arguments that would not be possible using other approaches, and therefore

helps produce reliable and trustworthy knowledge (Thomas, 2011).

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4.9 RESEARCHER POSITION

Case study methodology can be criticised when the researcher is seen as either an ‘insider’

or an ‘outsider.’ Therefore, within case study research, attention is paid to the researcher

role to ensure transparency (Yin, 2009). When conducting research, ‘insiders’ can be

characterised by shared culture, language, ethnicity, and religious association (Nowicka and

Ryan, 2015). ‘Insiders’ can also be participants who carry out, are involved in, or associated

with, the research within their own organisational settings (Crowe et al., 2011; Nowicka and

Ryan, 2015). An ‘insider’ has the advantage of accessing potentially hard-to-reach

populations, as well as benefitting from additional relevant knowledge, and an implied

credibility and ethical understanding, to conduct the research (Hayfield and Huxley, 2015).

However, an ‘insider’ poses a risk of identifying participants and other sensitive information,

such as medical treatments and actions of HCPs (Crowe et al., 2011). Although I possess at

least some of the characteristics identified above by Nowicka and Ryan (2015), which may

have aided access to the research sites, my knowledge of clinical procedures and diagnoses

is negligible and there is no pre-existing relationship with these sites. Therefore, my position

is more of an ‘outsider’ because of a lack of previous clinical knowledge about clinical

procedures, study sites, and participants.

Being an ‘outsider’ is beneficial because, from a critical realist point of view, the study aims

to help understand participants’ perception of the process of ACPfYP. Appreciating different

viewpoints partly depends on the knowledge being ‘situated’ – embodied, localised, shared,

and connected within a specific context (Nowicka and Ryan, 2015). Understanding how this

knowledge is produced and understood does not require knowledge of clinical procedures.

The role of an ‘outsider’ can be an advantage because this study is being conducted from a

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neutral point of view and without an invested interest in either the health profession or the

research sites. In this sense, being an ‘outsider’ avoids the claim by Hayfield and Huxley

(2015) that participants may be misconstrued or misunderstood by the ‘insider.’ Instead,

‘outsiders’ are in a better position to ask ‘naïve questions’ to explore topics in detail and

gain a depth of understanding that ‘insiders’ will accept or overlook (Hayfield and Huxley

2015: 4). As a parent, my role as a researcher is further strengthened due to understanding

the importance of including the view of parents/carers in the future care decisions of their

children; and the additional interest I have in ensuring young people are engaged in their

own planning process. Despite this position, neutrality will be maintained due to the lack of

previous engagement and involvement with both the participants and the research sites.

4.10 UNIT OF ANALYSIS

When designing a case study approach, the research process should include what Yin (2012)

terms ‘construct validity’ – an operational set of measures that help reduce the risk of

subjective judgements invalidating the research. The first of these stages is defining a ‘case,’

which is otherwise known as ‘a unit of analysis’ (Yin, 2014). Understanding the unit of

analysis, or case, will determine the research design (Yin, 2014). A case ‘seeks to explain

how and why a series of events occurred’ (Yin 2012: 89). Therefore, a case can be a person

or a phenomenon.

Defining the case clearly can help with replication and comparison of research findings

(Zucker, 2009). For the purposes of this research, the criteria for a case are:

A young person aged 13-24 years. This term corresponds with the definition of a

‘young adult’ as given by Medical Subject Headings (MeSH) (US National Library of

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Medicine, 2017). This definition reduces potential complications, such as assessing

intellectual capacity, when involving younger children as research participants. The

classification allows data to be gathered, recorded, and analysed more easily in the

timeframe for the research. Such a category also fills a gap in the knowledge in

terms of exploring the experiences of participants and engagement of the young

person during ACPfYP.

The young person has both a LLC and an ACP in place. Not all young people

identified for the study are receiving EoLC because of parallel planning, when plans

are made for life while also allowing for a deterioration in condition, or even death

(Together for Short Lives, 2013).


This chapter outlined the methodological and philosophical considerations made in planning

to answer the research question. The design chosen utilises a critical realist ontology and an

interpretivist epistemology, within a qualitative framework, to consider perspectives of

ACPfYP. The chapter included the consideration of different research methodologies and a

rationale for the choice of case study methodology, which allowed for the research study

aims to be met: firstly, it helped elicit in-depth information and meet Yin's (2012; 2014)

reasons to explore complex issues; secondly, the flexibility of case study methodology

allowed for a greater and in-depth understanding of ACPfYP than would the adoption of

other methodologies; thirdly, case study methodology was a good fit with the ontological

and epistemological viewpoints for this study; and this approach was most suited to achieve

the goals of the study, and so help to fill a gap in the existing literature using a methodology

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which is original in this area of research.

Chapter Five, Method, will consider and justify the method adopted to identify participants,

gather, and analyse data to answer the research question.

CHAPTER 5 – METHOD5.1 CHAPTER INTRODUCTION

The previous chapter explored the theoretical and philosophical underpinnings which

shaped the research study in order to meet the study aims and research question. This

chapter sets out the method, data analysis and ethical considerations of the study. Initially,

the research aim, research question, and study objectives are stated. A consideration of

methods, and justification for adopting the chosen research design, is then provided. Ethical

considerations relating to this study are outlined to indicate the relevant key issues. A

summary of the chapter brings together a discussion of the sequential stages of the

research and the procedures followed to carry out the case study.

5.2 RESEARCH AIM, QUESTION AND OBJECTIVES

The overarching aim of the study was to investigate the views and experiences of young

people, their parents/carers, and HCPs in the advance care planning process, utilising a

multiple case study methodology. The research question was: ‘What are the views and

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experiences of young people, their parents/carers, and HCPs in the advance care planning

process?’ The three research objectives, which focused on key areas of the exploration,

were:

Objective 1: To explore the views and experiences of young people, their

parents/carers, and HCPs using advance care planning.


parents/carers, and HCPs regarding the timing of the

implementation of advance care planning.


parents/carers, and HCPs of the challenges and facilitators to the

engagement of young people in the advance care planning

process.

Research projects that contain a proposition are more likely to be feasible studies and stay

within their boundaries (Baxter and Jack, 2008). To this end, the proposition for this study

was: the views and experiences of young people, their parents/carers, and HCPs, are

dependent on the timing of the implementation of ACPfYP, and the degree to which the

barriers and facilitators hinder or help the engagement of young people in the advance care

planning process.

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5.3 RESEARCH DESIGN

This section will begin by defining the case, and will then outline the recruitment and

sampling strategies for the study. Data for the case study were collected in two stages,

which addressed the research objectives set out above and allowed for reflection on the

implementation and use of ACPfYP from the perspectives of different participant groups in

the process.

5.3.1 DEFINING THE CASE

Clearly defining the case helps to explore real-life phenomena (Crowe et al. 2011; Yin 1999,

2014). The case for this study was the young people meeting the criteria set out in Chapter

4: a young person aged 13-24 years, who has both a LLC, and an ACP in place.

Once the case was defined, contact with relevant clinical leads was established. Clinical

colleagues at regional meetings indicated sufficient interest in the initial research topic. The

full list of NHS Trusts was finalised once the parents/carers for the case studies had been

identified and consented to take part in the research. This was a holistic case study as a

qualitative, multiple case study methodology, and different participant groups, were used

(Yin, 2014).

5.3.2 SAMPLING

Replication logic consists of literal replication of sampling, which can be used to predict

similar results (Yin, 2014). Conversely, sampling logic is used to find participants to

represent a larger sample of the population rather than to understand the phenomenon

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under scrutiny (Yin, 2014). Although sampling logic is useful in research, it is more suited to

large surveys where a larger population needs to be represented (Yin, 2014). Replication

logic is a better fit for multiple case studies because it allows for the exploration of an

iterative process (Yin, 2014). Merriam (1998) suggested that purposive sampling is

appropriate for case study methodology, and this term corresponds with Yin’s (2014)

definition of replication logic. Despite the assertion of both Thomas (2011) and Stake (1995)

that the quality of a case study does not depend on sampling, purposive sampling was

adopted for this study because of the need to consciously select and recruit certain

participants (Burns, 1987). Purposive sampling has also been used previously in similar

research (see, for example, Hechter et al., 2008; Boddy et al., 2013; Noyes et al., 2013; Gaab

and Steinhorn 2015) and so was judged an appropriate sampling method. Using purposive

sampling can also indicate increased confidence in the overall research findings by giving the

study greater external validity compared to sampling logic (Crabtree and Miller, 1999; Yin,

2014).

5.3.2.1 INCLUSION AND EXCLUSION CRITERIA: YOUNG PEOPLE AND THEIR PARENTS/CARERS

The participants for Stage One of the research were the parents/carers of the young person

identified as the case and, where possible, the young person themselves. Consequently,

there were up to three interviews for each case study from Stage One that could contribute

to building the case study. However, the case study was able to proceed with only the

parent/carer interview if the young person did not wish to take part or was unable to take

part due to developmental, cognitive, or communication difficulties.

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The focus of this stage of the case study was the young person. To facilitate the engagement

of young people in the case studies, the inclusion criteria for the identification of young

people included items relating to their ability to communicate. Acknowledging

communication ability avoided a potential situation where all case studies would include

only parents/carers from Stage One and therefore not include the opinions of the young

people. Depending on the age and status of the young person, it was recognised that they

may be married; for the purpose of this project, the carer may have been the spouse of the

young person. Any other children in the family were not included in the recruitment and

data collection processes, but the impact of the study on the children would have been

taken into consideration when providing post-interview support information. The inclusion

and exclusion criteria for the recruitment of Young People are summarised in Table 4.

Table 4 – Inclusion and exclusion criteria for the recruitment of young people


The young person will be:

1. Aged 13-24 years

2. Have a life-limiting condition

3. Have an ACP in place

4. Identified by a clinical lead at the named clinical sites

5. Although not a criterion to be a case for the study, the young person will have relatively intact verbal communication or other established method of communication to participate in the data collection phase of the study themselves.

The young person will be excluded if they do not meet all of the inclusion criteria and:

1. They are too unwell to be interviewed

2. The young person is considered imminently close to death as indicated by the clinical team.

3. Parents/carers do not give their consent for the young person to be included in the interview phase of the study

4. The young person does not give consent/assent to be interviewed

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An essential eligibility criterion for recruitment was that ACPfYP was in place and the ACP

process had already begun for the young people participating in the study. Therefore, the

research was looking retrospectively at the timing of implementation and their experience

of ACPfYP, along with the challenges and facilitators to engage the young person in the

process. Whilst clinical leads sought to identify young people who were not considered to

be in a terminal phase of care, it was important to recognise the four stages of palliative

care2 (Palliative Care Outcomes Collaboration, 2008). Furthermore, young people can have

an unpredictable journey with many peaks and troughs through several of the stages of

palliative care. Clinical leads were mindful of the current health and stage of all potential

participants, and used their clinical judgement and knowledge of the person to seek

engagement with those who were in a stable phase for Stage One. The inclusion and

exclusion criteria for the recruitment of parents/carers are summarised in Table 5.

Table 5 – Inclusion and exclusion criteria for the recruitment of parents/carers


1. Aged 18+

2. ACPfYP must be in place for their ‘young person’ who is aged 13-24 years

3. Identified by a clinical lead at the named clinical sites

4. Must be able to communicate fluently in English

1. Their ‘young person’ does not currently use an ACP

2. Aged under 18

3. Cannot communicate fluently in English

4. Their ‘young person’ has died before data collection has begun for the parents/carers

2 These are: stable, unstable, deteriorating, and terminal.

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5.3.2.2 Inclusion and exclusion criteria: Healthcare professionals

As with Stage One of the research, purposive sampling was adopted to ensure the inclusion

of those HCPs involved in implementing and using ACPfYP for the young people participating

in Stage One of the research. The sampling procedure for recruitment for Stage Two of the

research is summarised in Table 6.

Table 6 - Sampling criteria for the recruitment of HCPs


1. They must be involved in the implementation and use of ACPfYP with a young person identified as a ‘case’ in Stage One

2. They can be working at any professional grade, and for the NHS or other healthcare service including children’s hospices

3. They must be 18+ years old

4. They must be able to communicate fluently in English

1. They are not involved with ACPfYP for the young people in Stage One of the study

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5.3.2 RECRUITMENT

A clear sampling and recruitment process designed in collaboration with clinical staff was

used to identify young people as potential cases for the research. Young people and

potential research sites were consulted about the identification process to ensure approved

processes were followed. The opinions of young people, adults, and parents were also

sought in the development of materials for the recruitment process to ensure that

appropriate information and language was included. Patient and Public Involvement (PPI)

led to seven individuals (young people n=4; parents n=3) being consulted about the research

materials. PPI helped shape the language and layout of participant information sheets (PIS)

to ensure they were accessible for potential participants (see Appendix 9 for a sample PIS).

This process had been tested by members of the research supervisory team in a previous

research collaboration between two of the research sites.

Reach sites (a NHS children’s hospital and two children’s hospices) were contacted to help

recruit participants who met the criteria of a case set out above. Once the recruitment

process had begun, feedback from clinical leads suggested the available population of the

target age group of young people at that time tended not to have ACPs, with many young

people with ACPs being under 8 years old or over 19 years old. It was recognised there

would be a limited number of young people with verbal ability available for this study, but

due to a lack of available young people with an ACP, and no potential cases where the

young person had verbal ability, the age range for the study was increased in April 2017. In

addition, options were explored to expand the number of research sites. Contact was

established with additional potential research sites: children’s hospices, hospitals, local and

national charities, and organisations supporting and providing care for young people with

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LLCs. Social media was also used to contact potential participants. This amended

recruitment strategy resulted in three research sites being added to the study: a centre

which supports young people with Muscular Dystrophy, a children’s hospice, and a national

charity for children and young people with LLCs and LTCs, and their families. A further NHS

Trust, and a second charity were identified as potential sites.

Cases were identified through non-NHS sites, such as charities, who promoted the study to

their service users and followers on social media. In these instances, key contacts within

these organisations either (i) identified potential participants and promoted the study to the

parents/carers who meet the eligibility criteria outlined above; or (ii) promoted the study

via their social media, website, and any other means they used to distribute material. For

both processes, this enabled potential participants to contact me as the lead researcher to

express an interest in participating in the study. At this point I confirmed the participant met

the inclusion criteria for the study before proceeding any further. If a participant did not

meet the inclusion criteria, this process provided the opportunity for me to explain why this

person was ineligible and thank them for their interest in the study.

The potential fluctuation of young people’s conditions was something to be mindful of when

contacting families during recruitment and data collection. Once cases had been identified,

the stages of recruitment and data collection were split into two stages to build the case

studies. The recruitment elements of these two stages are outlined separately below.

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5.3.2.1 Stage One: Recruitment of young people, and their parents and carers.

Initially, young people fulfilling the eligibility criteria for a case, as outlined above (see the

inclusion and exclusion criteria and Table 4, page 101), were identified by the clinical leads

at the research sites. The demographic form (Appendix 6) was completed to provide key

anonymous information such as the date of birth of the young person, LLC diagnosis, date

initial ACP was put in place, and to highlight the professionals and Trusts involved to

facilitate approvals that need to be sought. In turn, this information helped guide NHS

management permissions for Stage Two of building the case study.

The clinical leads were the first point of contact for the study and they sent an invitation

flyer (Appendix 7) directly to the parents/carers of potential participants who fulfilled the

sampling criteria (Table 4). The flyer informed parents/carers of the study and provided

contact details so those who were interested could contact me to ask any questions about

the study. During this initial telephone conversation, the study was discussed with potential

participants, the age of the young person was confirmed, and it was established whether

the parents/carers wanted to involve the young person in the research. This conversation

provided the parents/carers with the opportunity to identify any reasons why they did not

want their child to be involved.

If parents/carers wished to receive further information about the study, contact details

were gathered and they were sent an information pack letter (Appendix 8) and PIS

(Appendix 9). Although it is usual practice to access young people for research purposes

through the parents/carers as a gatekeeper, the law states that, in line with the Gillick

competence ruling, people aged 16 years of age and above are able to give their consent to

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participate in research if they capacity to do so; someone under the age of 16 is not

automatically considered ‘Gillick competent’. The ability of participants under the age of 16

to consent is judged on an individual basis and consent or assent obtained as necessary

(Modi, 2014; Griffith, 2016).

Therefore, it was important to recognise the need to approach this age group directly in this

study. Following the advice of the NHS Research Ethics Committee (REC), potential

participants aged under 16 years of age were contacted initially through the parents/carers;

and those aged 16 years and above were contacted at the same time as their

parents/carers. To recognise potential difficulties determining informed consent by young

people at this stage of the process, it was also recognised that parents may need to be

involved to explain the research to their children or give consent on their behalf (Kodish,

2003).

The young person was sent an age-appropriate PIS (see Appendix 11 for a sample PIS) to

help inform their decision whether or not to participate. The PIS set out the responsibilities

of the researcher, and the participants’ involvement in the research. Both categories of

young people were encouraged to talk to their parents/carers before committing to being

involved in the research. If the young person was unable or unwilling to be involved, the

data were collected from parents/carers only in this stage of the research. This research

design allowed the study to continue if the young person met the criteria to be a case study

but was not included in the data collection stage of the research. Providing information

before collecting data helped maintain the autonomy of participants, and assent of the

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young person aged under 16 years could be combined with consent of their parents/carers

for optimal results (Harrington Jacobs, 2005).

5.3.2.2 Stage Two: Recruitment of healthcare professionals

For Stage Two of the research, HCPs were initially identified via by the demographic form

(Appendix 6) as being involved in using the ACPfYP with the participants in Stage One of the

research. They could be in any healthcare profession in line with the sampling criteria (see

Table 6, page 102). It was anticipated that this stage of recruitment might include

consultants, doctors, and nurses from a range of services, including the NHS and charities

such as children’s hospices. It was expected there would be up to three interviews per case

for Stage Two of the research. However, the precise number of interviews was determined

by individual cases during Stage One. This process helped inform submissions to NHS Trusts

for ethical approval. The identification of HCPs was confirmed by the young people and

parents/carers during data collection in Stage One and this process also allowed any newly

identified HCPs to be added.

Once a HCP was identified, the appropriate approvals were sought from their Trust or

organisation for them to participate in the research. Potential participants were contacted

via email (Appendix 10), without identifying the young person from Stage One of the

research, in order to seek their interest in participating in the case study. A relevant PIS (see

Appendix 9 for an example PIS) was attached to the email to outline the research, along

with my contact details as the researcher. As with Stage One, there was also an opportunity

for them to ask any questions during an initial telephone conversation. If they were

interested in taking part, this conversation provided an opportunity to talk about the study

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and discuss the identity of the young person involved in Stage One of the research. An

interview was arranged at a mutually agreeable time and location with those HCPs willing to

participate in the study.

5.3.3 DATA COLLECTION

This section presents the methods that were considered to collect data for the study,

including ethics, consent, confidentiality, and procedures for undertaking individual

interviews. Rationale is provided for the use of semi-structured interviews for this study.

The data collection method is also outlined for the two stages of the research.

5.3.3.1 Methods of data collection considered

Observations of the implementation and use of ACPfYP could have aided the

contextualisation of real events in real time by allowing observation of group interactions

(Tellis, 1997; Bryman, 2008). Studying different people involved in ACPfYP processes in their

naturally occurring settings might have captured their social meanings as part of their

ordinary activities (Brewer, 2000). However, observations risked ignoring the motivations

and attitudes of individuals as part of ACPfYP (Yin, 2014). A more appropriate method of

data collection was required to meet the research aim of exploring individual views and

experiences.

Another method considered for this study was focus groups. A main strength of using focus

groups is the flexibility and potential breadth of their use (Liamputtong, 2011). This method

is not tied to any particular ontological or epistemological viewpoint, and focus group

research can help draw out participants’ individual ideas, opinions, and understanding

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(Wilkinson, 2014). Despite useful opportunities to identify and discuss support needs within

a group setting, the use of focus groups with HCPs was not practical and raised ethical issues

about the identification of poor clinical practice (Bradburn et al., 1995). Data analysis

collected from focus groups can also be compromised, resulting in no better information

than from one-to-one interviewing (Wilkinson, 2014). Therefore, focus groups can result in

data which is limited in reliability and validity (Wilkinson, 2014). Furthermore, this study did

not comfortably fit into any of the situations Robinson (1999) identified as suitable for using

focus group method.3 Subsequently, focus groups were not considered to be an appropriate

research approach for this study. A qualitative approach which allowed participants greater

flexibility and an opportunity to express their views in a more suitable and supportive

environment was judged likely to gather more valuable data.

Interviews are more commonly used in qualitative studies and are often seen as

synonymous with qualitative enquiries (Tellis, 1997; Reiter et al., 2011; Baskarada et al.,

2013). Interviews are an appropriate method for explorative studies, and, therefore, case

studies, because they allow for the collection of rich data to explore the research question

(Reiter et al., 2011; Yin 2012, 2014; Zucker 2009). Consequently, case studies of individuals

in healthcare research often involve interviews (Zucker, 2009).

5.3.3.1.1 Types of interviews

Interviews can gather an in-depth account of participants’ experiences (Polkinghorne, 2005).

Case study interviews differ from other forms of in-depth interviewing as the approach

3 These are: ‘basic research, to contribute to fundamental theory and knowledge; applied research, to develop programme effectiveness; summative research, to determine programme effectiveness; formative evaluation, for programme improvement; action research, for problem-solving’ (Robinson 1999: 6).

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values experiences of individuals as unique to them, and therefore they help to understand

the individual’s perspective (Yin, 2009; Thomas, 2011). There are different types of

interviews used in research, including individual interviews, telephone interviews, and group

interviews (Harvey, 2011). As previously identified, group interviews are not conducive to

discussing potentially emotive topics and the sharing of professional practice. Individual,

and telephone, interviews are better suited to discussing sensitive issues because of the

reassurance which the interview can provide (Holbrook et al., 2003; Harvey, 2011).

Telephone interviews can also be time-efficient, and help increase involvement of hard-to-

reach participants in research (Holbrook et al., 2003; Harvey, 2011).

Structured interviews are the least flexible format as they follow a set of specific, short,

questions, which are generally ordered (Stuckey, 2013). These interviews are also time

efficient, and limit interpretive bias by allowing the researcher to control the interview

(Doody and Noonan, 2013). However, structured interviews do not allow for participants to

elaborate on their answers, which limits the opportunity to collect in-depth data (Doody and

Noonan, 2013).

Conversely, narrative, unstructured, interviews are guided by very general questions and

encourage the participant to share an account of their experience (Stuckey, 2013). The

flexible format allows for the exploration of experiences, and so generates the in-depth data

missing from structured interviews (Doody and Noonan, 2013). However, collecting and

analysing the data can be very time-consuming and it is difficult to make clear links in the

data (Doody and Noonan, 2013).

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Semi-structured interviews sit in between these two opposites. These interviews are guided

by topic-based questions and are led by the participant (Stuckey, 2013). The flexibility of

semi-structured interviews allows rich data to be generated by allowing participants to

explore their feelings and experiences (Doody and Noonan, 2013). Semi-structured

interviews also provide opportunities for the interviewer to explore emerging issues through

open-ended questions (Yin, 2009; Doody and Noonan, 2013).

5.3.3.1.2 Rationale for adopting individual, semi-structured interviews

To build the case studies, individual, semi-structured interviews were used with young

people and parents/carers (Stage One), and HCPs (Stage Two). These interviews were

appropriate for this study because they have been used in similar previous studies to

explore coping strategies of HCPs and perception of support provision (Forster and Hafiz,

2015); research with young people (Lotz et al., 2015); and to investigate the experiences of

nurses in palliative care (Reid 2013). Semi-structured interviews can reveal how individuals

construct reality, interpret their world, and think about different situations (Yin, 2009; Mack

et al., 2011). The ability to target interviews at the most appropriate people means they are

insightful and can be considered one of the most important sources of case study research

(Tellis, 1997). Indeed, semi-structured interviews are a ‘construction site for knowledge’ to

help understand different themes (Kvale 1996: 14). Understanding is aided by the flexible

nature of the interview to help recognise interviewees’ responses, identify emerging

themes, and adapt questions as necessary while still covering the same general topics

(Radwan et al., 2010; Thomas, 2011; Baskarada et al., 2013).

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In accordance with guidelines for undertaking multiple case studies (Yin 2012; 2014), a pre-

established set of questions for both research stages was developed in order to gather

relevant data. The interview structure helped maintain the focus of data collection directly

on the case study and provided insight into perceived causal inferences by the participant

(Yin, 2014). Adding or removing questions from the interview schedule, or asking questions

out of sequence, allowed the interviews to follow the flow of a conversation and allow for

the probing of more detailed information where necessary (Radwan et al., 2010). In this

way, there was the opportunity to conduct the interview in a more relaxed manner than

some other methods previously mentioned, and so collect more valuable and reliable data.

This direct approach elicited a participant’s experience of the phenomena to be explored in

an interactive manner (Radwan et al., 2010).

5.4 STAGE ONE: DATA COLLECTION WITH YOUNG PEOPLE AND THEIR PARENTS/CARERS

5.4.1 INTERVIEWS WITH YOUNG PEOPLE

Interviews with young people were arranged to take place as soon as possible after

recruitment. Twenty-four hours prior to individual interviews with young people,

households were contacted to confirm the interview could go ahead. The length of the

interviews with the young person was influenced by their individual condition but were not

generally expected to last more than 30 minutes. The interview was often the first time I

had direct contact with the young person, which provided the opportunity to discuss the

research directly with them to ensure they understood it and answer any questions, as set

out in the PIS (See Appendix 9 for an example PIS) (Schofield, 2014).

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For all participants, it was important to adhere to the principle of informed consent

(Thomas, 2011; Yin, 2014; National Health Service, 2016a). Informed consent is important

because it builds trust between the participant and the researcher, thereby contributing to

the effectiveness and rigour of the study (Roache, 2014). As described by the HRA (2017a),

for consent to be both legal and ethical it must be:

Given by a person with capacity;

Voluntarily given, with no undue influence;

Given by someone who has been adequately informed;

A fair choice.

The issue of capacity has been discussed in Chapter 1 (page 16) and Chapter 2 (page 32),

and the subject of consent will now be outlined. For young people and adults with cognitive

difficulties, it was important that consent was voluntary and based on information about the

study which was understandable to them, explained what was involved in the study, and

summarised the potential risks and benefits of taking part (Modi et al., 2014; National

Health Service, 2016a; Health Research Authority, 2017). For people without the capacity to

give informed consent, agreement to participate must be obtained on their behalf from a

parent, or legally authorised representative; this, in effect, is considered to be the child’s

active affirmative agreement (Modi et al., 2014). This process aimed to approximate

informed consent for paediatric patients in the best way possible (Kodish, 2003). All

participants were encouraged to ask questions prior to the interview being set up, at the

interview stage before it commenced, and post-interview. Consent was gained from

participants before interviewing commenced (see Appendix 12 for an example

assent/consent form). Parental involvement to gain the consent or assent of young people

did not materialise in practice.

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Young people were offered an individual interview without the presence of an appropriate

adult in the room, although the appropriate adult would still have been in another nearby

room in the home or building. Where needed to aid communication, or requested by the

young person themselves, the interview could be conducted with an appropriate adult

present for support. This was made clear in the age-appropriate PIS sent to both the young

person and the PIS sent to parents/carers (see Appendix 9 for an example PIS). Both the PIS

and the pre-interview conversations clearly explained that the adult present in the room

would not be part of the interview process itself. In practice, young people were

interviewed on their own without the presence of parents/carers. My Director of Studies,

who is experienced at interviewing children with cognitive deficits, was present for initial

interviews with young people and was able to act as the appropriate adult.

In instances where an appropriate adult was required in the room during an interview, it

was important to recognise the presence of parents/carers during the interviews of young

people and the impact this could have on the data. Young people may have acted to

preserve the social order of their families and so may have withheld information or offered

spurious information, such as their awareness of a prognosis (Bluebond-Langner et al.,

2005). To minimise potential bias, there was a clear interview schedule (see Appendix 11)

and questions were to be directed to the young person.

In essence, the interviews were conducted on a one-to-one basis and an appropriate adult

was not requested. The one-to-one interviews allowed an opportunity to probe answers

more fully and encouraged participants to be more open in their answers. Each interview

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with young people lasted approximately 18 minutes. At the end of the interview, details of

support contacts were provided in case participants needed additional support post-

interview (see Appendix 13 for an example post-interview support information sheet).

To protect the rights and dignity of participants, they were able to stop an interview at any

point and were informed of their rights to withdraw from the research (Gray, 2014).

However, once the interview data had been analysed and merged with other data, it was

not possible to remove it. For this reason, a time limit of 7 days after the interview was put

on withdrawal of research data from the study. This was made clear in the PIS and on the

assent/consent forms.

5.4.2 INTERVIEWS WITH PARENTS AND CARERS

On arrival for the interview, the purpose of the research was explained and any questions

related to the study were answered. Participants were asked to complete a consent form

(see Appendix 12 for an example assent/consent form) to indicate their wish to take part.

The semi-structured interview was then conducted using a clear interview schedule (see

Appendix 14). Interviews were expected to last no longer than 60 minutes and, in practice,

lasted between 15 minutes and 60 minutes. At the end of the interview, details of support

contacts were provided, if required, in case participants felt as though they need additional

support post-interview (see Appendix 13 for an example post-interview support information

sheet).

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5.5 STAGE TWO: DATA COLLECTION WITH HEALTHCARE PROFESSIONALS

As with interviews in Stage One of the case study, interviews in Stage Two were arranged to

take place as soon as possible after recruitment. If there was a delay between recruitment

and the interview, an email was sent as a reminder of the interview details. Interviews were

offered by telephone at a convenient time; face-to-face interviews, at a time and place

convenient to participants, were accommodated if needed. Prior to interviews commencing,

the research was explained and any questions were answers. Written consent for

participation was gained from HCPs for face to face interviews and verbal consent for

telephone interviews (see Appendix 11 for an example consent form). Interviews were

conducted using a clear interview schedule (see Appendix 15 for an example interview

schedule). To maintain continuity with the data collection process in Stage One, semi-

structured interviews were used to collect data in Stage Two. Interviews were expected to

last no longer than 60 minutes and, in practice, ranged from 44 minutes to 100 minutes. At

the end of the interview, details of support contacts were provided in case participants felt

they needed additional support post-interview (see Appendix 13 for an example post-

interview support information sheet). A summary of the recruitment and data collection

process for Stages One and Two is illustrated below (Figure 4).

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Figure 4 – Summary of the recruitment and data collection process for Stages One and

Two

5.6

DATA SATURATION

Data saturation is achieved when the following conditions are met: there is enough

information to replicate the study, the capacity to gather additional fresh information has

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Diagram 1 – Recruitment and data collection process for Phase One and Phase Two

Potential cases identified by clinical leads according to inclusion/exclusion criteria Clinical leads send flyer to parents/carers

END

No response Phase One

Parents/carers respond to the flyer and contact the researcher

Researcher sends parents/carers an information pack

Researcher offers parents/carers an opportunity to ask questions about potential participation and discusses the

invitation of the young person to participate If the parents/carers agree to proceed, interviews are

arranged at a mutually agreeable time and place

No longer willing to

participate. Thanked for

their interest.

Parents/carers are contacted 24 hours prior

to their interview

Gain consent from parents/carers for their own

interview Conduct interview

No consent

Gain consent from parent/care and assent from young person for the young

person’s interview Conduct interview

Phase Two HCPs identified by clinical leads and parents/carers according to

inclusion/exclusion criteria Researcher sends invitation email and PIS and one reminder email if needed

HCPs respond to email

Researcher offers HCPs an opportunity to ask questions about potential participation.

If the HCP agrees to be interviewed, the interview is arranged HCP no longer

willing to participate. Thanked for

their interest.

Gain consent from the HCP and conduct interview

END END

No consent and/or assent

No response

END

Parents/carers are contacted in the 24 period hours prior to young person’s interview

.

been reached, and further coding is no longer practical (Fusch and Ness, 2015). In

qualitative studies using interviews, saturation can be reached after between fifteen and

twenty interviews (Mason, 2010). For purposes of consistency with definitions of data

saturation in qualitative research and in line with previous research, this study took a data

category to be saturated if it is reflected in more than 70 percent of the interviews (Bowen,

2008).

5.7 DATA ANALYSIS

This section sets out the approaches which were considered for data analysis. Justification is

then provided for adopting both thematic analysis and critical discourse analysis (CDA) as

analytical approaches.

5.7.1 DATA SOURCES

Data was drawn from the 15 individual interviews, examination of completed

documentation for ACPfYP, and the recording of personal thoughts and feelings in a

reflective diary. Data were collected between July 2017 and June 2018. All interviews were

digitally recorded to ensure I could engage with the participant and the data during the

interview, and additional notes were written on the interview schedule during each

interview to aid analysis. Digital audio recording allowed full transcription of the interview

without the risk of losing any detail. Digital audio data can enrich analysis by allowing

participants to express themselves in their own voice (Maloney and Paolisso, 2001). No

participants refused to have their interview digitally recorded, or occasional notes to be

written down during the interview. Anticipated failures of technical equipment did not

happen.

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5.8 DATA PREPARATION

The purpose of data preparation was to organise the data to facilitate the next stage in their

processing. It was anticipated that I would transcribe each recording verbatim, using the

transcription convention in Appendix 16. Transcription allowed familiarity to be gained with

the data and provided a sufficient level of detail to meet the needs of the data analysis,

which is set out below. Each interview recording was listened to in its entirety to familiarise

myself with the recording (Kvale, 2007). I then listened to the recording a second time to

ensure the transcript was correct. During a third and final listen of the recording, the

transcript convention was applied to the transcript. An example of the transcription is

provided in Appendix 17. To protect participants’ anonymity, individual names were

replaced with a pseudonym. It was anticipated that each transcription would take between

8 and 10 hours to complete, depending on the length and complexity of each recording. In

practice, transcription took at least double this amount of time.

5.9 APPROACHES CONSIDERED FOR DATA ANALYSIS

When faced with a mass of data, coding is important to represent the main themes.

Recognising the most frequent, or the most significant responses, allowed data to be

analysed and compared in different ways than in its original state (Mathers et al., 1998). The

case study approach allowed analysis of cases, both within and across different settings (Yin

2009, 2014). This section outlines the different approaches considered for data analysis, and

then presents the justification for the use of thematic analysis and CDA.

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5.9.1 ANALYTICAL APPROACHES CONSIDERED

Constant comparative analysis, where one piece of data is taken and compared to all other

data, helps determine themes to understand similarities and differences in data (Thorne,

2000). However, constant comparative analysis is better suited to grounded theory

methodology and so was not considered an appropriate analytical method for this study

(Thorne, 2000). A phenomenological approach to analysis would have been useful to

understand patterns in the data by allowing comparison both within and between data sets

(Thorne, 2000). However, phenomenological methods are not concerned with why different

people have different experiences, or why there are differences between those different

experiences (Willig, 2008).

Content analysis was considered as a method of analysing the data because it is

concentrated on sense-making, language and interaction (Wooffitt, 2005). This method of

analysis has been employed in previous qualitative research with ACP where interviews

were used as a method of data collection (Thoresen and Lillemoen, 2016). However, content

analysis is utilised to present a summary of data and is less selective and interpretive than is

needed for an explorative study (Wilkinson, 2016). Furthermore, the analysis of in-talk

conversation and interaction does not allow the rich understanding of context to

understand power dynamics in ACPfYP (Miller and Fox, 2004; Wooffitt, 2005; ten Have,

2007). Therefore, more of an analytical approach was needed to identify the richness of

data and complement the ontological and epistemological framework of the study. A

method of analysis was also required which recognised and helped understand the

complexity of power within relationships.

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Thematic analysis aims to ground the particular topics of the study under relevant themes

discovered in the literature (Attride-Stirling, 2001). New themes can also be developed to

provide the study with depth of meaning (Braun and Clarke, 2006; Vaismoradi et al., 2016).

Thematic analysis is useful to understand accounts of social phenomena because it positions

the perspectives of participants rather than those of the analyst (Silverman, 2014). Thematic

analysis also fitted well with the philosophical framework adopted for the study (see

Chapter 4, page 79) (Braun, 2006 and Clarke; Silverman, 2014). Furthermore, thematic

analysis has been used in similar previous research: to determine barriers and facilitators

and engagement of patients in goals of care discussions (Shah et al., 2016); to identify

barriers and strategies in ACP discussions (Ahluwalia et al., 2015); and ascertain experiences

of HCPs providing EoLC to children (McConnell et al., 2016).

Discourse analysis is the close study of talk and texts, and helps investigate meanings in

conversation (Traynor, 2005). In this sense, discourse analysis recognises some elements of

power or dominance in relationships (van Dijk, 1993). These relationships may be between

parents and their children, or between different HCPs where a hierarchy exists, and were

identified to some extent in existing literature (Hechter et al., 2008; Seymour et al., 2010;

Barling et al., 2014; Fletcher et al., 2015). Interpretation is also needed to understand these

relationships, which are often discovered through the richness of data which is collected.

Discourse analysis recognises that meanings of communication are socially-situated, and

these social situations are contextualised. Language thus presents triggers to build an

understanding of the context in which it is used (Gee, 1999). For example, language can

emphasise the importance of family life, self-identity, feelings, or the ritualisation of HCPs

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through their use of institutional terminology (Ainsworth-Vaughn, 2001; Cook-Gumperz and

Kryatzis, 2001).

5.9.2 RATIONALE FOR USING THEMATIC ANALYSIS AND DISCOURSE ANALYSIS

Thematic analysis was chosen to code the data from this study on a phase-by-phase basis

because it helped identify the main themes, or patterns, within the data (Attride-Stirling

2001; Shah et al., 2016). Furthermore, a thematic approach,

’organise[s] participants’ words into meaningful units in the context of the research question…to generate [a] rich and detailed yet complex account of the data’ (Gaab and Steinhorn 2015: 3).

Thematic analysis is well-suited to the explorative nature of case study methodology and

can help build a true picture of the individual cases. Thematic analysis has also been used in

previous studies around ACP (Lotz et al., 2013; Ahluwalia et al., 2015; Shah et al., 2016).

Indeed, research by Ahluwalia et al. (2015) explored the iterative process of ACP

implementation, which further indicated its suitability. Thematic analysis helps to

contextualise the data, and facilitate the development of key themes from the data, but

does not enable exploring specific contexts such as actions and reactions to other people or

different situations (Clarke et al., 2015; Meredith, 2016). Thematic analysis was useful to

identify relevant themes within the data but did not provide opportunities to understand

the wider power dynamics which were identified in Chapter 2 (Background Literature

Review). The power relationships were of particular interest in ACPfYP and, therefore, an

additional method of data analysis was needed which more clearly facilitated the

explorative and interpretive approach of this aspect of the study (Glynos et al., 2009).

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These meanings are best understood by identifying triggers and clues in language, by which

individuals adapt their language to match the situation and context in which they are

communicating (Gee, 1999). Discourse analysis was beneficial to add a further layer of detail

to the thematic analysis. By identifying potential power relations in ACPfYP, this approach

was useful to understand and explore the iterative process of ACPfYP from multiple

perspectives. In this way, discourse analysis was valuable to,

‘obtain knowledge of the world and its workings, particularly of the causal relationships which operate within it’ (Wetherell, Taylor and Yates, 2001: 11).

Discourse analysis has been employed previously to explore different perceptions of

individuals in a variety of disciplines: business, education and nursing (Hmelo-Silver and

Chernobilsky, 2008; Rogers and Ellis, 2014; Evans-Agnew et al., 2016). Case study

methodology and discourse analysis also fit together within qualitative studies (Zucker,

2009). This method of analysis also fitted neatly with the previously identified

epistemological and ontological approaches for this study as it originates from an anti-realist

and critical realist stance (Hedlund-de Witt, 2008; Silverman, 2011). Crucially, discourse

analysis has not been used utilised previously with case study methodology to explore

ACPfYP with the participant groups identified for this study.

5.9.2.1 Types of discourse analysis

There are many different types of discourse analysis and choosing the best fitting approach

for this study depended on whether the focus of the power relationships was explanatory or

critical (Glynos et al., 2009). Critical discourse analysis (CDA) identifies a particular inequality

in relationships (van Dijk, 1993; Redwood, 1999). CDA was the most appropriate method of

discourse analysis for this study because it recognises more than simple interactions and

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relationships between different participants in the process of ACPfYP. There is an additional

variance in both quality of care and access to care which need to be understood as part of

ACPfYP (Travers and Taylor, 2016). For example, the need to empower young people has

been identified in previous research with young people using ACP (Lyon et al., 2013). Local

authorities and institutions have also been identified as lacking power to implement and

assess the needs of young people and provide services to some young people (Marie Curie

Cancer Care, 2012). Therefore, CDA was chosen as a critical approach to both identify these

inequalities in greater detail and challenge them within the process of ACPfYP.

CDA has also been used previously in healthcare research to help scrutinise the ways in

which different forms of communication embodied distinct versions of the world, and reveal

connections between language and less transparent elements in social life, such as power

relations (Traynor, 2005). Furthermore, CDA is a rigorous approach which is useful to

analyse naturally occurring dialogue, and helps to contextualise social and cultural contexts

by understanding how world views and identities are constructed through discourse (Gee,

1999; Traynor, 2005). For example, a parent might also be a carer, a spouse, and a conduit

for communication between HCPs and their child.

Using CDA also allowed for analytical generalisations within the study’s theoretical

framework by gaining a knowledge of the world, its workings and the causal relationships

within it (Wetherell et al., 2001: 11). This method of analysis can be useful to apply findings

to other situations: by allowing for comparisons between case studies as well as within

cases, the rigour of the research can be strengthened (Yin 2012). CDA has not previously

been used to explore power relationships in ACPfYP. Therefore, employing CDA in this study

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is another significant and unique contribution of this study to the existing knowledge-base

of ACPfYP.

5.10 PROCESS OF DATA ANALYSIS

This section sets out the stages for each method of analysis used in the study. The

procedure for thematic analysis is outlined first, followed by the process for CDA.

5.10.1 PROCESS OF THEMATIC ANALYSIS

Attride-Sterling’s (2001) model of thematic analysis was useful because it allowed for

analytical generalisations within the study’s theoretical framework. This analysis enabled

comparisons between case studies which created opportunities to compare and contrast

different practices within similar situations (Yin 2012). Although statistical or broad

generalisations might be difficult from a case study approach (Thomas 2011), analytical

generalisations are appropriate (Yin 2012), and inductive generalisations are possible from a

critical realist perspective (Easton 2010). Generalising results means the findings can be

transferred to similar situations (Baskarada et al., 2013). Adopting Attride-Sterling’s (2001)

model of thematic analysis helped maintain consistency of findings in the data analysis stage

(Baxter and Jack 2008). The stages of thematic analysis can be summarised by the following

steps:

Code the data

The coding framework is devised on the basis of issues that arise from the

interviews, such as specific topics or words.

Use the coding framework to dissect the text into text segments.

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Identify themes based on the text segments and then refine the themes

Construct thematic networks

Select the basic themes

Rearrange the basic themes into organising themes consisting of similar

issues

Deduce global theme(s)

Illustrate, verify and then refine the thematic network(s)

Describe and explore the thematic networks

Summarise the thematic networks

Interpret patterns

Double coding of data was used to improve consistency: codes are used in the analysis

process and then recoding takes place at a later stage to compare with the first coding

(Baxter and Jack 2008). Findings were also re-read and reviewed to ensure consistency with

coding and analysis, improve internal validity and reduce the opportunity for making

spurious inferences from data (Yin 2014).

5.10.2 PROCESS OF CRITICAL DISCOURSE ANALYSIS

The adopted variant of CDA which was used to explore the engagement of young people in

their own ACP is based on Fairclough's (2012) account. This description of CDA recognises

the role of discourse in a post-structural world and emphasises the potential for social and

structural change (Jorgensen and Phillips, 2002). Van Dijk’s socio-cognitive approach

stresses a psychologically-focused view of how people process social information and so

would be more suitable for IPA methodology (Jorgensen and Phillips, 2002). In contrast,

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Fairclough’s CDA is the best variant to use for analysing data surrounding ACPfYP because of

its simplicity and his attitude that CDA is about,

‘(a) meaning-making as an element of the social process; (b) the language associated with a particular social field or practice […]; (c) a way of construing aspects of the world associated with a particular social perspective’ (Fairclough, 2012: 11).

The following process was adopted from Paltridge (2006) to analyse interview transcripts

because it offers simplicity and provides a clear framework for the analysis:

1. Start by deciding what discourse type or genre the text represents and to

what extent the text does or does not conform to it.

2. Frame the text using the following perspectives:

i. Sentence level – this includes identifying such areas as what has been

topicalised, who has the most authority and power in the discourse

and whether the passive voice is used.

ii. Word and phrase level – identifying things such as connotations of

particular words and phrases, formality/informality of the text, choice

of words, degree of certainty and attitude of expression and perceived

attitude of the interviewee to that of the interviewer.

Transcript conventions more traditionally aligned with conversation analysis are still useful

for transcription purposes in CDA. In this sense, these transcription conventions have

become almost globalised in their nature (Potter, 1987; Slembrouck, 2007). This convention

represents the most commonly-used symbols, which allowed for an in-depth understanding

of utterances and interactions during the interviews (ten Have, 2007).

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5.11 DATA MANAGEMENT

NVivo was used as a data management tool because this software helped develop a

sensitive interpretation of complex data and enable a method of rigorously exploring

themes. Use of this tool assisted with the coding process and the identification of un-coded

data.

5.12 RIGOUR IN THE RESEARCH PROCESS

The process of scrutinising, confirming and checking the accuracy of data was used

throughout the study to inform each stage of the research process. To increase rigour in the

study, preliminary anonymous findings were reported, and the processes for data collection

and data analysis were shared with colleagues such as the research supervision team and

clinicians at regional network meetings (Yin, 2014). The research supervision team were

also involved in undertaking independent analysis of some transcripts to support and verify

the development of themes and sub-themes, and guide the analysis process. To improve

internal validity, interviews and findings were also re-read and reviewed to ensure

consistency with coding and analysis and (Yin 2014).

The research supervision team, as experienced researchers, ensured ethical standards

within the research design were adhered to through regular supervision meetings and

observation of initial interviews. The clear process contributed to the development of trust

between participants and me during the interview stage of the study, and identified

different methods of interpretation and analysis appropriate to the research topic; thereby

helping to uphold the rigour of the research. Furthermore, undertaking interviews and

analysing the data helped maintain a connection with the data and avoid the criticism from

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Baxter and Jack (2008) that researchers using a case study approach can become too distant

from their data.

Some of the ethical issues which were considered when undertaking this research will now

be outlined. These were important to ensure that participants and researchers were

safeguarded, and that the data collected was valid, reliable and minimised error.

5.13 ETHICAL CONSIDERATIONS

This study raised a number of potential ethical issues, such as respect for participants,

autonomy, beneficence, non-maleficence, best interest, and justice (Harrington Jacobs,

2005). Nevertheless, rather than asking whether it is ethical to include young people in

research about their own palliative care, it could instead be considered unethical not to

attempt to include them in such research (Downing, 2016). Ethical approval was gained by

adhering to standard processes and guidance for all areas of the project including

recruitment, informed consent, confidentiality, storage of data, and reporting of data. Other

issues considered were related to the impact of the research on both participants and

researchers. These are outlined in turn below, as well as the ethical approvals which were

obligatory before data collection began.

Human participants are defined by The British Psychological Society (BPS 2014) as including

human beings who are alive, as well as their research records. All interactions with human

beings, and data collected from them, deserve the utmost care to protect the welfare,

autonomy, dignity, rights, and the safety of all participants. Sensitivity to the wellbeing, and

minimising the risk of harm to, participants was the social responsibility of the researcher.

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Attention was paid to the welfare of participants from recruitment and data collection

through to the storage and use of their data.

5.13.1 CONFIDENTIALITY AND ANONYMITY

Every effort and precaution was made to try and protect participants’ anonymity and ensure

confidentiality (Gray, 2014; Yin, 2014) within the confines of Edge Hill University guidelines

(URESC Ethical Guidance for Undertaking Research with Children and Young People, 2012).

Firstly, quotations and narrative descriptions used in the research, and any subsequent

publications, were anonymised; secondly, the coding of data helped provide a further layer

of anonymity (Reid, 2013). In addition, participants were given unique identifiers to

maintain confidentiality. Prior to agreeing to participate, conditions were set out under

which confidentiality or anonymity could not be guaranteed, such as disclosure if a crime

had been committed, if someone was at risk of harm, if poor practice was reported to me,

or poor practice was observed as part of the study.

In these situations, it was important to recognise and follow Edge Hill University guidelines

about disclosure (Edge Hill University Safeguarding Policy, 2013; Edge Hill University Code of

Practice for the Conduct of Research, 2014). Reporting concerns would involve taking

appropriate action such as reporting to my supervisory team and if appropriate, to a

Trust/organisation for further investigation. No crimes or poor practice was observed or

reported during the duration of the study.

5.13.2 PROTECTING PARTICIPANTS FROM HARM

All research poses a certain amount of risk to participants (Health Research Authority,

2018a). Discussing ACPfYP may be particularly sensitive and difficult for participants

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(Damianakis and Woodford, 2012; The National Institute for Health and Care Excellence,

2017). Researchers need to be especially aware of the impact of such research on young

people (Health Research Authority, 2018b).

A number of potential problems have been raised about protecting participants from harm

during research (Thomas, 2011). For this study, intrusion was minimised by scheduling

interviews at a convenient time and place. Reducing disruption for participants also helped

answer the potential problem about the invasion of privacy. The semi-structured process of

the interview allowed participants to contribute and engage in a flexible way which suited

them and their needs. The length of interviews was also not restricted as they were led by

the participant, thus contributing to the semi-structured interview format. The design of the

interview schedule took into consideration the potential for harm from a lengthy interview

by keeping the questions focused and to a minimum. The PIS also provided an approximate

length of the interviews, which indicates the need to be sensitive to the situation of young

people and ensure interviews were not protracted. In short, the approach was determined

by access to participants, the age of the young people, and the nature of their medical

condition. The interview was designed to allow participants to direct the tone of the

interview in order to express their views and experiences of ACPfYP.

HCPs were notified that the research further aimed to inform their procedures and assist

their working practices. For young people and their parents/carers, the research was

intended to explore their views and experiences of ACPfYP. This approach helped to combat

Thomas’ (2011) question about ensuring that participants’ standing, both professionally and

in the community, was not harmed. Participants’ data were anonymised, and their personal

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data were kept confidential within the confines of the exceptions referred to above (Gray,

2014; Yin, 2014).

Although prior knowledge of the facts around the implementation of ACPfYP risked leading

to biased conclusions, it was important to be open to different processes (Yin, 2014).

Participants were treated with fairness and respect, and the rigorous research design

ensured equal opportunities and humans rights legislation were not infringed (Gray, 2014).

High standards were set for the research through,

‘a responsibility to scholarship, such as neither plagiarising nor falsifying information, as well as being honest, avoiding deception and accepting responsibility [for my own work] … keeping up with related research, ensuring accuracy, striving for credibility and understanding and divulging the needed methodological qualifiers and limitations to [my own] work’ (Yin 2014: 76-77).

To ensure that participants who experienced distress or discomfort were adequately

supported (Thomas, 2011), Edge Hill University frameworks around Research Governance

and Ethics were followed. These included: University Research Ethics Sub-Committee

(URESC) Ethical Guidance for Undertaking Research with Children and Young People (2012);

Research Data Management Guidelines (2013); Code of Practice for the Conduct of Research

(2014); Framework for Research Ethics (2014); and Research Risk Assessment at Edge Hill

University (2014). Abiding by these policies helped safeguard participants and anticipate for

the possibility of aggressive or distressing situations. Similarly, if HCPs had any issues or

concerns as a result of the interview, they were provided with details of appropriate sources

of support and also encouraged to talk to an appropriate colleague or line manager if they

needed to. As far as it is known, no such issues of harm arose from the interviews.

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5.13.3 PROTECTING RESEARCHERS FROM HARM

In addition, it was essential to recognise the emotional impact that the interviewing process

can have on the researcher. I familiarised myself with guidelines around Research Risk

Assessment at Edge Hill University (2014). Furthermore, the safe fieldwork policy was

followed for all fieldwork in accordance with Edge Hill University’s Evidence-based Practice

Research Centre (EPRC) guidance. Debriefing was also available with the research

supervision team, and counselling was also accessible at Edge Hill University should this

have been required.

5.13.4 DATA MANAGEMENT AND STORAGE

Before interviews began, potential participants were provided with relevant written

information about the use and storage of data for the research. Edge Hill University

guidelines and data protection guidelines around data management and storage were

followed, and data were stored securely on the university network during the study. Data

will be stored securely for 10 years from the end of the study. Assent and consent forms

were stored electronically and anonymised interview transcripts will not be deleted for 10

years from the end of the study. Consent forms, participant information, and data, including

data sticks, were kept in a locked filing cabinet, which was in an office which was locked

when not in use. Data transported on electronic devices were only accessible with a

password. Any identifying data, such as contact details, were stored separately to interview

data. Data were handled, processed, stored, and destroyed in compliance with the Data

Protection Act 1998 and the General Data Protection Guidelines (GDPR) 2018.

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Deception was actively avoided in the research (Gray, 2014; Yin, 2014). Participants were

fully informed of the processes of the study and how their data would be stored and used.

Sharing information with participants is particularly important when working with a

vulnerable group of people (Yin, 2014).

5.13.5 RESEARCH ETHICS COMMITTEE APPROVALS

The ethics guidance and best practice guidelines directed the ethical approval process:

1) Faculty Research Ethics Committee (FREC): The research proposal and

relevant materials (such as flyer, PIS, information pack, consent forms and

interview questions) were submitted to the Edge Hill University Faculty of

Health and Social Care FREC for review and approval. This is a requirement

for university research. The letter of approval was sent to the research sites

involved to evidence that the study had been reviewed and approved. FREC

approval was gained initially on 24th May 2016. Subsequent amendments

and approvals were sought during the course of the project as research sites

were added and the recruitment process was refined. The final FREC

approval was granted on 20th November 2017 (See Appendix 18).

2) NHS Research Ethics Committee (REC): The research required submission and

approval from NHS Research Ethics Committee (REC) due to the involvement

of young people, their parents/carers and the discussion of care in the

collection of data. REC approval was gained on 14th October 2016 (see

Appendix 19).

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3) NHS Health Research Authority (HRA) and Research & Development

(R&D) management permission: As the research involved undertaking

interviews on the premises of a NHS organisation, with NHS patients or with

NHS staff, approval was required from the HRA and individual NHS sites

involved in the study. After REC approval had been gained, the HRA were

able to confirm their approval of the study. The lead R&D submission was

then made to the primary clinical site, with approval gained on 27 th October

2016. Additional Trusts were added as necessary during the recruitment

stage of the research. HRA approval was gained for the final time on 14 th

May 2018 (see Appendix 20 for HRA approval. NHS R&D approvals are not

provided due to anonymisation).

To ensure ethical guidelines were observed, no data collection began until ethical approval

was received from the FREC, NHS REC and any other organisation involved in the research.


This chapter has set out and justified the chosen methods of recruitment, sampling, data

collection, data management, and data analysis which are consistent with the aims of the

research. The chosen methods were suitable to examine the different and concurrent

perspectives of ACPfYP, and the facilitators and barriers to the engagement of young people

in ACPfYP, in the required depth to fully reflect case study methodology. Thematic analysis

can help develop relevant themes to answer the research question stated at the beginning

of this chapter. CDA was chosen to explore the power relationships involved in the process

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of engaging young people in the ACPfYP process. The chapter has also indicated the

necessary ethical considerations and the actions taken for this study to ensure that data are

handled within the boundaries of the necessary laws, policies, procedures, and

organisations involved in the study.

The following chapter, Findings: thematic analysis, presents the thematic findings from the

data collection stage of the study.

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CHAPTER 6 – FINDINGS: THEMATIC ANALYSIS6.1 CHAPTER INTRODUCTION

The previous chapter outlined the methods employed in the study. This chapter presents

the study’s findings regarding the barriers and facilitators to engaging young people in their

ACP following thematic analysis of the data. Initially, the cases will be outlined to help

contextualise the findings. Where possible, findings will be presented within each theme in

the following order: young people, parents/carers, and HCPs. This mirrors the order of

identifying participants for the study and the order of data collection from participants.

Throughout the presentation of the findings, all participants, places, and institutions are

referred to by their pseudonyms (Appendix 21). Verbatim quotes, where selected, are taken

from across all participants and have been used to illustrate views of specific individuals, or

are chosen to best show the point being made.

6.2 PARTICIPANTS

A total of 24 cases were identified during the recruitment phase of the study. These cases

originated from the following services:

19 cases from children’s hospices;

3 cases from the Aldfort Centre, a regional centre to support adults and young

people with Muscular Dystrophy;

2 cases via social media of national children’s charities.

Young people were perceived by HCPs to meet the recruitment sampling criteria in all 24

cases. There was no response in 19 cases, and individuals for five cases were invited to

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participate in the study. The young person in one of the five cases withdrew because of ill

health before data collection had begun. The recruitment process is summarised in Figure 5.

Figure 5 – The recruitment phase of the study

6.3 THE CASES

This section sets out each of the four case studies in turn. Context is provided regarding the

age and condition of the young people, and when their ACP was initiated. The experience of

the HCPs is also outlined to help provide background to their understanding of ACPfYP and

working with young people.

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6.3.1 ANDREW’S CASE STUDY

The total number of interviews for Andrew’s case study is summarised in Figure 6 (Summary

of participants interviewed for Andrew’s case study):

Figure 6 – Summary of participants interviewed for Andrew's case study

At the time of the interview, Andrew was 23 years old. He had Duchenne Muscular

Dystrophy (DMD) and was diagnosed when he was approximately four years old. Planning

for Andrew’s ACP began when he was approximately 15 years old, so had been in place for

about eight years. His condition did not appear to have negatively impacted on his

education and Andrew was studying at college at the time of the interviews. He had been

cared for primarily by his grandparents for an unspecified number of years, although

Elizabeth (Grandparent) said Andrew saw his father regularly. Andrew’s grandfather died in

the year prior to the interview, leaving his grandmother, Elizabeth, as the main relative to

care for him. Elizabeth was supported by Susannah, who had been employed as a

professional carer for the last three years. Andrew had received care under paediatric

services and had now transitioned to adult services due to his age. Transition resulted in

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John

Elizabeth

Male Aged 23 English

heritage

Susannah

Andrew

Andrew leaving the care of a children’s hospice, and he now attends the Aldfort Centre , a

regional centre for people with Muscular Dystrophy.

Due to the length of time since initiating the ACP for Andrew, all participants in the case

study were uncertain about the names of most of the HCPs who had been involved in ACP

discussions. John (Consultant Paediatric Neurologist) was the only HCP Andrew, Elizabeth

and Susannah could clearly identify as being involved in Andrew’s ACP. Consequently, John

was invited to be interviewed for the study and he agreed to participate. When interviewing

John, he was also unsure about the involvement of other specific HCPs in Andrew’s ACP.

John felt he might be able to identify the involvement of possible hospital departments, but

the names of individual HCPs were not recorded on the ACP documentation and John said

the process took place too long ago to remember precisely who was involved in discussions.

Therefore, John was the only HCP interviewed for Andrew’s case study.

John’s experience of working with people who have neuromuscular conditions spanned at

least 16 years and across different European countries. He had an additional ten years or

more working with people who have LLCs and was one of the leading neurologists in the

region. He had undertaken various training and considered himself an effective educator for

others implementing ACPfYP.

6.3.2 BARTHOLOMEW’S CASE STUDY

The total number of interviews for Bartholomew’s case study is summarised in Figure 7

(Summary of participants interviewed for Bartholomew's case study).

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Figure 7 – Summary of participants interviewed for Bartholomew's case study

At the time of the interview, Bartholomew was 19 years old and was diagnosed with DMD

when he was two years old. ACP discussions had taken place but it was unclear how old

Bartholomew was when his ACP was initiated. Due to his condition, Bartholomew’s

cognitive ability was limited, and he sometimes found it difficult to clarify his answers to

interview questions. Bartholomew was in education and progressing through college. James

(Parent) was the main carer for Bartholomew and his younger siblings, and was keen to

share his views and experiences of ACPfYP and of Bartholomew’s care. Bartholomew had

never been under the care of any hospices and has instead relied on the services provided

by Ironcoast Hospital and Adlfort, the regional centre for people with Muscular Dystrophy.

Due to the ambiguity surrounding when Bartholomew’s ACP was initiated, both

Bartholomew and James were only able to identify one HCP, Matthew.

Matthew was a consultant paediatric neurologist with 11 years’ experience of working with

patients with neurological conditions. He had worked with young people with LLCs and

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complex healthcare needs for an additional unspecified time. Matthew identified two

further HCPs, Eve (Consultant Respiratory Physiotherapist) and Joanna (Ventilation

Specialist Nurse), who were involved in Bartholomew’s ACP.

Eve was a consultant respiratory physiotherapist. At the time of interviewing, she had been

in her current post for over two years and had up to ten years’ additional experience in

different parts of the UK of working with young people with LLCs and complex healthcare

needs. Eve was able to identify a further three HCPs, all consultants, who were involved in

Bartholomew’s ACP. All of these HCPs were invited to be interviewed as part of the study:

two did not reply to emails or telephone calls, and one did not want to participate.

Joanna was a ventilation specialist nurse. At the time of interviewing, Joanna said she had

four years’ experience of working with young people with LLCs and complex healthcare

needs.

6.3.3 PETER’S CASE STUDY

The total number of interviews for Peter’s case study is summarised in Figure 8 (Summary of

participants interviewed for Peter's case study).

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Figure 8 – Summary of participants interviewed for Peter's case study

Peter was 16 years old at the time he was identified as a case for this study. He had a range

of complex conditions, which meant he was non-verbal and could not be interviewed for the

study. Therefore Lydia, his mother, was the only non-professional interviewed for this case.

Planning for Peter’s ACP began when he was approximately 14 years old and it had been in

place for about two year at the time of the interview. Peter was in education full-time and

had carers at his house; Lydia also cared for him full-time. Due to his age, Peter was still

receiving care under the paediatric services at Lightfog Hospital. He was also under the care

of Deepford House Children’s Hospice. Lydia (Parent) identified both Mary (Hospice Clinical

Manager) and Sarah (Paediatric Palliative Care Consultant) as being involved with Peter’s

ACP discussions. When interviewing Mary (Hospice Clinical Manager), Ruth (Consultant

Paediatrician) was also identified as being involved in Peter’s ACP. All three HCPs identified

as being involved in Peter’s ACP agreed to be interviewed as part of the study.

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Mary had been the hospice clinical manager at Deepford House Children’s Hospice for about

21 years and this comprised her total experience of working with young people who have

LLCs or complex healthcare needs.

Ruth was a consultant paediatrician and split her working week between Deepford House

Children’s Hospice and Summercourt Hospital. She had been working with young people

with LLCs and complex healthcare needs for about five years, plus additional unspecified

time during her training.

Sarah was a paediatric palliative care consultant at Lightfog Hospital. With nearly 25 years’

experience working with young people with LLCs and complex healthcare needs, Sarah was

the most experienced of the HCPs interviewed for the study. This experience spanned

palliative care, oncology and neurology.

6.3.4 MIRIAM’S CASE STUDY

The total number of interviews for Miriam’s case study is summarised in Figure 9 (Summary

of participants interviewed for Miriam's case study).

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Figure 9 – Summary of participants interviewed for Miriam's case study

Miriam was 14 years old at the time she was identified as a case for this study. She had a

range of complex conditions which meant she was non-communicative and could not be

interviewed for the study. Rachel, Miriam’s mother, was the only non-professional

interviewed for the case study. It was unclear when planning began for Miriam’s ACP, but

her ACP had been in place for approximately a year at the time Rachel was interviewed.

Miriam was in education full-time and had full-time carers at her house, but Rachel also

cared for her full-time. Due to her age, Miriam was still receiving care under the paediatric

services at different hospitals and she was also under the care of Deepford House Children’s

Hospice. Rachel (Parent) identified four HCPs, all consultants, involved in Miriam’s ACP

discussions. Two HCPs did not reply to emails and telephone calls, and one did not want to

be interviewed. Only Hannah (General Paediatrician) agreed to be interviewed to build

Miriam’s case study.

Hannah had experience of working with children and young people with LLCs or LTCs for

approximately ten years, and at the time of interviewing had been a paediatric consultant at

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Summercourt Hospital about for two years. Hannah had overseen Miriam’s care for

approximately a year-and-a-half.

6.4 FINDINGS

A discussion of the themes and sub-themes generated from the data will be presented

thematically to help understand the timing of ACPfYP discussions and the engagement of

young people in their own ACP. Identifying clear themes helped ascertain the barriers and

facilitators to engaging young people in ACPfYP. Seven major themes were identified in the

data:

1. Understanding of ACP

2. ACPfYP in practice

3. Communication

4. Education and training for HCPs

5. Relationships

6. Organisational structure and culture

7. Involving young people in their own ACP

Some of these themes are comprised of various sub-themes, which were created to

understand the data more clearly, and are illustrated in Figure 10.

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Figure 10 – Themes and sub-themes in the data

Themes are presented below with supporting anonymised quotes. Findings are arranged by

case, where possible, so the views and experiences of parents and HCPs for each case are

presented together.

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6.4.1 THEME 1: UNDERSTANDING OF ACP

This theme presents the various perceptions of ACP from across the case studies. There are

two sub-themes to aid assimilation of the data: ACP as a planning process to meet current

and future needs; and misunderstanding ACP. Data is presented by case to help understand

the first objective of the study: the views and experiences of ACP.

6.4.1.1 ACP as a planning process to meet current and future needs

In Andrew’s case study, Andrew (Young Person) understood ACP as being useful to arrange

and organise his individual current and existing care needs:

‘[ACP is useful to plan for] my personal needs and stuff like that’ (Andrew, Young Person, lines 49 and 119).

As the concepts of ‘personal needs’ and ‘stuff’ were explored in the interview, Andrew

appeared to have used them as general terms for all non-medical needs. The consultant in

Andrew’s case study also suggested ACP aims to plan for young people’s future care to

ensure a change, or deterioration, in their condition is considered as part of the planning

process:

‘it’s about a planning of what to do if there’s a deterioration or a change in health’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 162-163).

Moreover, three participants (carer, parent and HCP) in Andrew’s case study believed ACP

should aim to support young people and at least maintain their condition.

‘if he’s in my care that, and something happens, they…they do all they can to support him’ (Susannah, Carer, Andrew’s case study, lines 26-27).

This view was similar to the opinions in Bartholomew’s case study, where an improvement

in health was also identified:

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‘[ACP] could be [for] personal needs or carers or something good with care…I just want to, like, breathe better than this’ (Bartholomew, Young Person, lines 54-55 and 164).

Equally, in Bartholomew’s case study, ACP should aim to do,

‘something to support Bartholomew or someone who’s not well for long term as in medical and his daily life’ (James, Parent, Bartholomew’s case study, lines 156-157).

Likewise, Matthew (Consultant Paediatric Neurologist) felt that ACP should aim to avoid

pain and suffering at the end of life:

‘you want to avoid a horrible death’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 1046-1047).

Matthew (Consultant Paediatric Neurologist) was the only participant to indicate ACP should

comprise both future care and treatment options the patient wants to include in addition to

what they do not want as part of this approach.

‘the key to it [ACP] is that it’s not just…what we don’t do…but I think more importantly we put in, what you will do’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 409 and 411).

Similarly, Joanna (Ventilation Specialist Nurse) was the only HCP in a non-consultant role

who identified the importance of ACP in planning specific, future non-medical wishes. She

acknowledged the role of a personal and comprehensive ACP process which allows patients

to plan for medication, treatment, and place of death.

‘[ACP] allows patients to plan for the future, plan what they want at end-of-life, whether it be where they want to die, who they want to be there, whether they want medication…whether they want to die on the ventilator or have it removed’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 51-55).

In Peter’s case study, Lydia (Parent) felt ACP should not be concentrated on a medical input:

‘I feel very strongly about that, that it wouldn’t, shouldn’t, be a medical input’ (Lydia, Parent, Peter’s case study, lines 107-108).

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Instead, the suggestion was that ACP should be a key part of the planning process to ensure

current and future care needs are met:

‘[ACP should be a] broad plan [to] put their [young people’s] wishes into place so that their wishes, as much as possible, could be fulfilled about how they might want to [be cared for if] they are going to pass away’ (Lydia, Parent, Peter’s case study, lines 88 and 99-101).

Lydia (Parent) viewed ACP as a safety mechanism which should come into effect when there

is a marked deterioration in the health of the young person:

‘[ACP should] kick in if Peter deteriorated’ (Lydia, Parent, Peter’s case study, line 848).

Furthermore, Lydia (Parent), and four HCPs across the case studies of Bartholomew and

Peter, also felt ACPfYP should aim to include the views of young people:

‘a plan of…what…they’d like things to be now and how they’d like things to be in the future’ (Ruth, Consultant Paediatrician, Peter’s case study, lines 123-124).

To aid the consideration of future care, Mary (Hospice Clinical Manager) felt that ACP

discussions should take place during a relatively stable period in the condition of young

people, and ideally before they become too unwell to be engaged in the process. In this

sense, ACP should aim to involve parents to express,

‘how they want their child, at the end-of-life, looked after…if a child becomes acutely unwell’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 35-37).

Similarly, Mary viewed ACP as recognising that plans need to be in place for the future:

‘[ACP is an opportunity to plan for] if a child becomes acutely unwell’ (Mary, Hospice Clinical Manager, Peter’s case study, line 37).

In Miriam’s case study, Rachel (Parent) identified some of these aims when she stated that

she wanted Miriam (Young Person) to be free from hurt and discomfort: ‘I want her [to be]

pain free’ (Rachel, Parent, Miriam’s case study, lines 950-951). In agreement with Matthew,

(Consultant Paediatric Neurologist), Rachel (Parent) described her idea of a bad EoL

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experience and a bad death: the young person is stressed and in pain, and there is a police

investigation after the child dies; furthermore, no-one is available to sign the death

certificate. She felt ACP would prevent this situation.

‘if things get bad and the kids are suffering, they can bring drugs in to help them so they’re not in pain and they’ll pass nice instead of all stressed out and everything’ (Rachel, Parent, Miriam’s case study, lines 343-346).

Hannah (General Paediatrician) recognised how these discussions can impact on the place of

death when she asked,

‘Would they rather be at home if she deteriorates? Would she rather be in hospital?’ (Hannah, General Paediatrician, Miriam’s case study, lines 71-72).

In this sense, ACP should be a far-reaching process which is intended to cover as much as

possible to plan for the current and future care of young people. As Matthew (Consultant

Paediatric Neurologist, Bartholomew’s case study, line 407) stated, ‘it has to be

comprehensive’. Rachel (Parent) agreed with this view:

‘An advance care plan is that you’ve everything in place’ (Rachel, Parent, Miriam’s case study, line 343).

Four HCPs felt ACP should not be rigid. John (Consultant Paediatric Neurologist) believed

ACP was best understood as a working definition which was not legally binding. A HCP in

Peter’s case study stated,

‘it’s a flexible document, a living document’ (Mary, Hospice Clinical Manager, Peter’s case study, line 419).

These definitions of ACP also incorporated the ideas of including parents (Mary, Hospice

Clinical Manager) and helping to make difficult and sensitive decisions (Eve, Consultant

Physiotherapist; and Lydia, Parent). In this sense, Matthew (Consultant Paediatric

Neurologist) echoed the opinion of all participants when he said:

‘the main thing about advance care planning is to get it right’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 1032).

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Therefore, despite disagreements about how to define ACP, the general agreement of all

participants was that it should aim to produce a better outcome for young people than if

one was not in place. However, the understanding of ACP generally focused on a medical

perception, and may also be characterised by misunderstanding of what ACP includes (see

the following sub-theme, page 153).

Young people’s role in their own care planning needed to be considered to help understand

how young people, their parents/carers, and HCPs viewed ACP. Some parents and HCPs

believed the consideration of young people’s hopes and wishes were important to include in

ACP:

‘[ACP should] detail…the individuals’ wishes…as they move through their care journey’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 193-194).

Joanna (Ventilation Specialist Nurse) and Ruth (Consultant Paediatrician) agreed ACP allows

young people to plan for their future care. In Peter’s case study, Mary (Hospice Clinical

Manager) and Sarah (Paediatric Palliative Care Consultant) suggested placing young people

at the centre of the ACP process would facilitate their engagement in the process:

‘it’s about person-centred [sic]…so it’s putting the child at the centre [of ACP]… it’s about thinking what’s important to the child’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 108-109 and 111).

These views contrasted with that of Rachel (Parent) who believed ACP should not aim to

include young people. Instead, Rachel suggested the focus of ACPfYP should aim to improve

young people’s quality of life:

‘[ACP is about] quality and not length [of life, which includes] going to school… getting out…fresh air…going on holidays…smiling…interacting…demanding… [having the] right attitude [to life]’ (Rachel, Parent, Miriam’s case study, lines 645 and 650-653).

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Therefore, the majority participants across the case studies demonstrated an understanding

of ACP and what it aimed to achieve, although participants indicated there can be different

definitions of ACP. HCPs generally appeared to have a more precise awareness of what

constitutes ACP, while young people and parents/carers often discussed a more holistic view

of ACP. The next sub-theme presents participants’ misunderstanding of ACP to conclude

the first theme in this chapter.

6.4.1.2 Misunderstanding of ACP

When exploring the definition and characteristics of ACP, there were three notable

exceptions. Elizabeth (Grandparent) and Rachel (Parent) both had a different interpretation

of ACP from other participants in the study. Elizabeth (Grandparent) confused ACP with a

statutory carer’s assessment and said she understood ACP as being focused on easing the

burden of care for the family of young people. She admitted that ultimately,

‘I don’t know what it [ACP] entails’ (Elizabeth, Grandparent, Andrew’s case study, line 427).

Rachel (Parent) also appeared to confuse ACP with an EoL plan for her daughter:

‘all you have to do is make one phone call then it all goes in, everyone else comes, they bring the drugs in, they put them up, they make her relax, and you can spend your time with her’ (Rachel, Parent, Miriam’s case study, lines 713-716).

While both Elizabeth and Rachel confused ACP with other assessments and plans, James

(Parent) said he was unfamiliar with the term. Although he explained what ACP might

consist of and how it might work, he also stated that,

‘I never heard this word from [any] specialist or anywhere’ (James, Parent, Bartholomew’s case study, line 166).

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Although most participants had a clear view of what constitutes ACP, three parents/carers

misunderstood the concept. Two were unfamiliar with the term, and one confused an ACP

with an EoL plan. These misunderstandings may have a significant impact on the care and

support they expected for their children, and will be discussed in subsequent themes.

6.4.1.3 Theme summary

There was some agreement between young people, their parents/carers, and HCPs about

what constituted ACP, yet there were also some stark differences, which can inform the

views and experiences of how ACP should work. There was a consensus that ACP should aim

to improve the care of young people, but there were disagreements about whether this

should be driven by a medical approach to care. There was broad agreement ACP should

include the views and opinions of young people. Differences in the understanding of ACP

might have been due to difficulties in communicating opinions but may also be attributed to

diverse experiences of ACP. The experiences of how ACPfYP worked in practice will now be

outlined to determine whether a different understanding of the process leads to different

practices.

6.4.2 THEME 2: ADVANCE CARE PLANNING FOR YOUNG PEOPLE (ACPFYP) IN PRACTICE

To contribute to the first and second objectives of the study, this theme presents the

experiences of ACPfYP for those involved in the process. This theme gives an insight into the

timing of ACPfYP discussions and the engagement of young people in the process by

bringing together the views and experiences of young people, their parents/carers, and

HCPs. Evidence is provided in a number of sub-themes: timing of ACPfYP discussions;

initiation of ACPfYP discussions; people involved in ACPfYP; support and information

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available during ACPfYP; process and documentation of ACPfYP; and the impact of ACPfYP

on care.

6.4.2.1 Timing of advance care planning for young people (ACPfYP) discussions

There was a lack of consensus across all four case studies about the appropriate timing of

ACPfYP discussions. In the case studies of Andrew, Bartholomew and Miriam, there was

agreement that formal ACPfYP was initiated when the young person was between

approximately 12 years and 15 years old. In Andrew’s case study, all participants concurred

that Andrew’s ACP began when he was in his early- to mid-teenage years because of

different conversations at key points in his care. John (Consultant Paediatric Neurologist)

indicated there were differences between participants in Andrew’s case study as to when

initial ACPfYP discussions for Andrew began, and when the ACPfYP was fully documented.

The ages John identified corresponded to those mentioned by Andrew and Susannah, and

accounted for the slight difference in the ages they believed Andrew’s ACP had started:

‘When he was fourteen he had spinal surgery so we will have had very open discussions about this because there’s a potential life-threatening major surgery. [ACP was fully initiated when] he was sixteen-and-a-half (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 521-523 and 556).

The timing of ACPfYP was considered important to plan for the future, as Andrew (Young

Person), stated:

‘[ACP is used] to plan for things if things went wrong’ (Andrew, young person, line 98).

Whilst different people in Andrew’s case study agreed on the approximate timing of

Andrew’s ACP, there was disagreement about the process by which ACP was raised. While

both Andrew (Young Person) and Susannah (Carer) felt ACP was initiated at regular, routine

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appointments, John (Consultant Paediatric Neurologist) acknowledged the previously

mentioned spinal surgery as the important trigger to discussions:

‘the timing…is always right if something big happens’ (John, Consultant Paediatric Neurologist), lines 615-616).

These triggers can be certain events, such as Andrew’s major surgery, or clear effects of

either the young person’s condition or those close to them: For example:

‘a family member or another individual affected by a similar or same disease, [if the young person is] really worried and he can’t sleep’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 651-652 and 655).

Therefore, it is important to identify the correct time to initiate ACPfYP:

‘[ACP] might be around timing for [treatment]’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, line 203).

For Matthew (Consultant Paediatric Neurologist), the trigger to initiate discussions needs to

be something significant in the condition or health of the young person:

‘[If] it’s come up that he [young person] needs non-invasive ventilation, I guess this is a point that would be a good point to start talking about it’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 378-379).

However, Matthew (Consultant Paediatric Neurologist) felt that triggers should be

distinguished from normal peaks and troughs of the young people’s condition:

‘if they’re unwell, that’s just because they’re like any other young person that can be unwell’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 390-391).

For this reason, it was felt that these triggers to begin ACPfYP conversations needed to be

clear. Triggers should not be confused with common variations in everyday life, but HCPs

should be patient to identify possible opportunities to open ACPfYP discussions:

‘we very much wait for an inroad to discuss advance care planning’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 816-817).

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Indeed, Eve (Consultant Respiratory Physiotherapist) believed that identifying such triggers

was crucial to initiating ACPfYP:

‘it’s all around timing, and for some children and young adults there might be a trigger’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 865-866).

Joanna (Ventilation Specialist Nurse) identified evidence these triggers are not being used

regularly to initiate ACPfYP:

‘we have [initiated ACP discussions without a trigger] with other patients, I’ve never done it with paediatrics’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 141-142).

In Bartholomew’s case study the introduction of equipment provided an opportunity to

begin discussions about ACP:

‘…the ventilator gave us that bridge to discussion’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 193-194).

Bartholomew felt his ACP had been discussed, but could not remember when it was

initiated:

‘[ACP has been in place] as long as I can remember’ (Bartholomew, Young Person, line 101).

Consequently, there was no agreement in Bartholomew’s case study about the timing of

Bartholomew’s ACP due to participants’ lack of memory and incomplete paperwork.

In Peter’s case study, Lydia (Parent) explained ACPfYP was initiated because a deterioration

in Peter’s condition was identified as a trigger:

‘We had some reason that might trigger, a deterioration’ (Lydia, Parent, Peter’s case study, lines 522-523).

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Additional triggers identified in Peter’s case study included a deterioration in the condition

of one of his friends, and also the impact of some friends beginning their own ACPfYP

discussions:

‘…there should be some sort of trigger if something particularly changes…the death or the deterioration of somebody else can then start…another person’s discussions’ (Lydia, Parent, Peter’s case study, lines 585-585 and 984-985).

These examples were echoed by a HCP:

‘more frequent hospital admissions, [or if the young person is] needing extra respiratory support from his symptom point of view, are those really getting out of control now or are you struggling to control those symptoms, [deterioration in] quality of life, sleeping more [or] less awake time’ (Ruth, Consultant Paediatrician, Peter’s case study, lines 381-389 and 394-395).

Yet there was general agreement that ACPfYP discussions should begin before the young

person’s condition deteriorates and they becomes too unwell to engage in the process.

‘[ACP discussions] should start before [the young person becomes really poorly]…in an ideal word’ (Mary, Hospice Clinical Manager, Peter’s case study, line 219).

This opinion concurs with the views of other HCPs, such as Sarah (Paediatric Palliative Care

Consultant):

‘[HCPs should strive to] sow that seed…earlier’ (Sarah Paediatric Palliative Care Consultant, Peter’s case study, lines 1099-1100).

In Miriam’s case study, Rachel (Parent) felt beginning ACPfYP discussions at birth would

represent a defeat to the parents:

‘I just thought, she’s our daughter and we’re going to fight this and we’re going to do it and give her the best life’ (Rachel, Parent, Miriam’s case study, lines 621-622).

As Rachel (Parent) viewed ACPfYP as an initial sign of failure and giving up on her daughter,

she did not want to participate in ACPfYP discussions. However, in line with the views in

other case studies, significant deteriorations in Miriam’s condition changed Rachel’s

opinion:

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‘it took a bit, because at first I said no you’re wrong. I said, don’t be stupid, you’re a consultant, course you can mend her, [but] he said, I can’t mend her, so he really knocked me then, and he said I need a meeting with you’ (Rachel, Parent, Miriam’s case study, lines 549 and 552-556).

This deterioration in Miriam’s condition, and Rachel’s realisation that her daughter could

not be ‘mended’ any more, resulted in the initiation of Miriam’s ACP. The recognition of a

clear deterioration in Miriam’s health being a trigger to ACP discussions was further

identified by a HCP:

‘Miriam hadn’t been quite right for a while, so we sort of said, do you know what, she isn’t quite right. It was quite a clear pattern that every time Miriam had a blip, she would be a little worse off and then a little worse off ’ (Hannah, General Paediatrician, Miriam’s case study, lines 190-191 and 218-219).

The importance of allowing time for ACPfYP discussions was identified by different

participants. One parent and three HCPs felt that taking their time during ACPfYP can refer

to not rushing through discussions and the documentation, but working at the pace of

young person and parents/carers:

‘give them time if possible, so discuss it early, discuss it before you expect that deterioration because then I’m a hundred per cent sure that made our lives a lot easier with this case’ (Hannah, General Paediatrician, Miriam’s case study, lines 482-484).

There were some clear indications from participants that HCPs, and possibly parents/carers,

could identify triggers to guide to the timing of ACPfYP discussions. However, it was also

important to understand who should initiate ACPfYP. The next sub-theme explores the

individuals who initiated ACPfYP in the case studies according to the young people, their

parents/carers and HCPs.

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6.4.2.2 Initiation of advance care planning for young people (ACPfYP) discussions

In the case studies of Andrew, Peter and Miriam, there was general agreement between

participants that ACPfYP was initiated by a consultant. For example, Andrew (Young Person),

said, ‘I think it was a consultant [at] Lightfog Hospital’ (lines 72-80). This view generally

corresponded with Susannah (Carer):

‘I think it was automatically set up through the hospital, probably when he‘s having his ongoing appointments’ (Susannah, Carer, Andrew’s case study, lines 59-60).

There was further consensus from John (Consultant Paediatric Neurologist) about who first

raised the subject of Andrew’s ACP:

‘I initiated this [ACP] before he needed non-invasive ventilation’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 291-292).

The only disagreement about who initiated Andrew’s ACP was due to Elizabeth’s

understanding of the definition of an ACP. Her confusion of ACP it with a statutory carer’s

assessment led Elizabeth to understand Andrew’s ACP was first raised by a social worker.

In Bartholomew’s case study, there was disagreement about who initiated ACPfYP.

Bartholomew (Young Person) was quite vague in his understanding of who was involved in

first discussing his ACP. Bartholomew was sure no-one in hospitals or hospices had begun

discussions with him, and could only remember his care plan had been initiated by

professionals around social work and carers.

James (Parent) could not recall ACPfYP discussions with any specific professional and could

only identify the care Bartholomew was under at hospital:

‘the specialists are from Ironcoast Hospital’ (James, Parent, Bartholomew’s case study, line 60).

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These views contrasted with those of HCPs in Bartholomew’s case study, who believed

Bartholomew’s ACP was first raised and discussed by unspecified professionals at,

‘a specialist under-twenty-five clinic that is joined with neurology’ (Eve, Ventilation Specialist Nurse, Bartholomew’s case study, lines 258-259).

Similarly, the lead HCP could not be specific about who first discussed ACP with

Bartholomew:

‘I don’t remember [who raised ACP] for Bartholomew, but…if there’s someone worried about the breathing or anything, they might see patients…but they’re still on my name’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 178-180).

Identification of who initiated discussions in Bartholomew’s case study was complicated by

the documentation, which did not record who was involved in ACP discussions:

‘I’ve had a look through his notes and it’s not clear’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, line 71).

Findings related to the format and documentation of ACPfYP will be discussed in sub-theme

6.4.2.5 below (page 173).

In Peter’s case study, there was agreement between Lydia (Parent), Mary (Hospice Clinical

Manager) and Ruth (Paediatric Consultant) that the paediatric consultant at Lightfog

Hospital initiated ACPfYP.

Identification of who initiated ACPfYP discussions in Miriam’s case study was a lot more

blurred. Rachel (Parent) initially recalled Lightfog Hospital, where Miriam’s care was

provided, before remembering the name of the consultant. Hannah (General Paediatrician)

was more certain which consultant initiated Miriam’s ACP.

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Therefore, in two case studies there was agreement that consultants initiated ACPfYP

discussions. There was no clear consensus in the other two case studies. The next sub-

theme presents the data regarding who else was involved in the ACPfYP process.

6.4.2.3 People involved in advance care planning for young people (ACPfYP)

To successfully engage young people who want to be part of their ACP, it is important to

consider who else should be part of the discussions. This sub-theme is based on the views

and experiences of young, people, parents/carers, and HCPs across the four case studies.

Findings will be presented by cohort of young people, Consultants, and family, as these are

the individuals or groups that participants spoke of when describing who should be

involved.

6.4.2.3.1 Young people involved in advance care planning for young people (ACPfYP)

Six participants across two case studies (Bartholomew and Peter) felt that young people

should be involved in their own ACP. Bartholomew (Young Person) felt young people should

be actively engaged in their own ACP because the care decisions are about them:

‘…they [young people] understand what it is and what support they can get from it’ (Bartholomew, Young Person, lines 512-513).

Similarly, James argued that young people were in the best position to make care decisions

about themselves:

‘[They] might have broader view of what’s happening, where to go, what to do ’ (James, Parent, Bartholomew’s case study, lines 472-472).

There was also a recognition that young people should be at the centre of the discussions:

‘it’s their disease, it’s…their illness…they’re the ones that are…going through all…this….so therefore we feel they need to have time and also the opportunity to

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express their wishes’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 290-293).

Out of the four case studies, two of the young people (Andrew and Bartholomew) were

engaged in their own ACP discussions. The engagement of these young people was

facilitated by a desire to be involved, the willing attitude of parents/carers, and HCPs, and

effective communication which had developed in relationships prior to ACPfYP being

initiated. However, the other two young people (Peter and Miriam) were not engaged in

their ACP discussions because they were non-verbal (Peter) or non-communicative (Miriam).

Nevertheless, there was still some desire to include Peter (Young Person) if he did have

verbal communication skills. The only alternative was for his mum to include his views and

opinions as best she could, given he was unable to take part:

‘Ideally a hundred percent the young person should be primarily involved in it…and if not, the people that know that person best’ (Lydia, Parent, Peter’s case study, lines 890-891).

Nevertheless, Mary (Hospice Clinical Manager) and Sarah (Paediatric Palliative Care

Consultant) felt that, whilst Peter could not participate, young people should ideally be at

the centre of ACP discussions where possible:

‘in a situation where you’ve got somebody who has some…capacity and…opportunity, I think you’ve got to put them in control’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 1074-1076).

Gatekeeping was apparent from two parents/carers (Elizabeth, Grandparent; and Rachel,

Parent) because they felt it was inappropriate for young people to be involved in their own

ACP:

‘it’s insensitive…I don’t think kids should be involved in it’ (Rachel, Parent, Miriam’s case study, lines 1469 and 1472).

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The engagement of young people is also dependent on the HCPs involved in ACPfYP. The

following sub-theme will present the role of consultants because they were identified by the

majority of participants as the most appropriate HCP to lead ACPfYP discussions.

6.4.2.3.2 Healthcare professionals (HCPs) involved in advance care planning for young people (ACPfYP)

Consultants were one the most significant groups of people involved in ACPfYP across the

case studies due to the number of them involved in arranging care for the young people:

‘Peter’s neurologist…the palliative consultant, Dr Wilson, Peter’s paediatric consultant…his respiratory consultant’ (Lydia, Parent, Peter’s case study, lines 625-626, 636 and 667).

The multi-professional team can offer a range of experience and expertise, and their

inclusion can avoid the duplication of meetings and additional communication to share

outcomes. The involvement of a multidisciplinary team was evident in Andrew’s case study:

‘…many of these discussions take place usually with another member of the team present so either a psychologist or a neuromuscular care advisor…experienced physiotherapists’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 381-384).

HCPs across the case studies of Bartholomew and Peter agreed that the multi-professional

team can bring expertise to ACPfYP or fill gaps in the experience of other HCPs. In Peter’s

case study, the ACPfYP process guided HCPs to ensure key professionals were involved:

‘Who’s the GP? Who’s the lead consultant? Who’s the lead? Who’s the key worker? Who’s actually holding those reigns, and if there isn’t anybody, who could be or should be?’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 792-794).

There was evidence that a range of professionals have been included in ACPfYP depending

on who is involved in the care of the young person. Lydia (Parent) believed this process

should consist of informed input from the main stakeholders in the ACP process. Sarah

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(Paediatric Palliative Care Consultant, Peter’s case study) clarified this statement with the

view that the most important feature of ACPfYP is the young person themselves. Thus,

ACPfYP was about,

‘putting the child and their family at the centre [and asking] who are the key professionals for them’ (Sarah, Paediatric Palliative Care Consultant, Bartholomew’s case study, lines 1189-1191).

Three participants across the case studies of Peter and Miriam felt the multidisciplinary

team of HCPs using ACPfYP concurrently came from different organisations. For example,

Hannah (General Paediatrician) spoke about the importance of a community nurse in

Miriam’s ACP because of the wide geographical location of service provision:

‘…there’s Leah Harris who is a children’s nurse who looks after her [Miriam] in the community. She’s been very good at sort of liaising with everybody and to make sure they’re involved’ (Hannah, General Paediatrician, Miriam’s case study, lines 95-97).

There was a general consensus in the case studies of Andrew and Bartholomew that ACP

should be led by a consultant who should have a long-standing relationship with the young

person:

‘you’ve got more confidence with them and stuff like that’ (Andrew’ Young Person, lines 323).

The view that consultants are the most appropriate person to lead ACPfYP was shared by all

HCPs across the case studies:

‘the lead clinician plays a vital and important role (John Consultant Paediatric Neurologist, Andrew’s case study, line 436).

Five participants across all four case studies suggested that other HCPs who are involved in

looking after the young person should also be involved. As one HCP said, ACPfYP should

include,

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‘any medical professional that reviews them on a regular basis, that they [young people] are comfortable with…that they know well’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 678-680).

This view was supported by a parent who listed the HCPs she would like to be involved:

‘Peter’s neurologist, the palliative consultant, Sarah Wilson…Peter’s paediatric consultant, and Mary Shaw at Deepford House [Children’s Hospice]’ (Lydia, Parent, Peter’s case study, lines 625-627).

Another professional was also identified by one parent as being able to contribute to ACP:

‘the social worker is a key person to sort things out’ (James, Parent, Bartholomew’s case study, 174-175).

Ruth (Consultant Paediatrician) suggested a psychologist or therapist could also be part of

the ACPfYP process to help understand and work through difficult and sensitive

conversations. These professionals might be particularly useful to engage young people with

cognitive difficulties or non-verbal forms of communication:

‘[They could work with young people] through play and discussions…but [just] working with the young person on a more gradual basis’ (Ruth Consultant Paediatrician, Peter’s case study, lines 970-972).

Other HCPs involved in the care of the young people, such as therapists, can be involved to

help facilitate the engagement of young people.

6.4.2.3.3 Family involved in advance care planning for young people (ACPfYP)

Parents/grandparents were the most frequently identified family members as being

involved in ACPfYP. Across all four case studies, parents/grandparents were identified in the

majority of ACPfYP (n=10). Susannah (Carer) recalled the people involved in Andrew’s ACP

had been primarily family and carers: aside from Andrew, it was

‘his Nan, me [and] his other carers’ (Susannah, Carer, Andrew’s case study, line 235).

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John (Consultant Paediatric Neurologist) agreed Andrew’s father was also involved in some

discussions, although he could not remember if there were any additional family members:

‘…his grandparents and…now I can’t remember, I think there was another family member was it his…father involved? I can’t remember that there were other family members involved at the time’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 536-540).

Similarly, Hannah (General Paediatrician) recognised the value of involving family members

in the planning process:

‘[It is important to] make sure parents know they can come to you and say we’re not sure we want this anymore and give them time, if possible, [to] discuss it early’ (Hannah, General Paediatrician, Miriam’s case study, lines 481-482).

Three participants felt that family members should be involved in ACPfYP discussions,

although this was always mentioned after setting out the contribution of HCPs: ‘And some

family’ (Andrew, Young Person, line 380). One young person was specific when identifying

that he would like his dad involved in ACP discussions, ‘from the beginning [of the process]’

(Bartholomew, Young Person, line 236).

HCPs felt that engaging the family was important to engaging the young person:

‘I think you have to first speak to the parents [in ACPfYP discussions]’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 781).

HCPs also tried to ensure the wider family was actively included in ACPfYP:

‘[Involving the young person and their parents in ACPfYP discussions is] what we prefer to do’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, line 274).

Another HCP agreed, and felt ACPfYP should consist of,

‘as many discussions it takes with the family’ (Ruth, Consultant Paediatrician, Peter’s case study, lines 607-608).

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Additionally, ACPfYP offered an opportunity to deliver a care plan which met the needs of all

family members. In this sense, the aim of ACPfYP should be to,

‘keep the child and family at the centre’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, line 883).

There was agreement that ACPfYP discussions should engage young people, where possible.

Parents/carers are also important to include in discussions because their close relationship

with young people means they can help convey their wishes.

When considering the experiences of ACPfYP as a whole, it was considered important that

young people, where possible, are involved in their own ACP because they understand their

own wishes and the direct impact of their condition. The general agreement was that

consultants should lead ACP discussions, but there are also other HCPs who should be

involved, including all those professionals who currently provide care to the young person.

Similarly, family members who are involved in providing care to the young person should

also be included in the process. Evidence suggested that encouraging the involvement of

these key people in ACPfYP created a positive experience of the process and is more likely to

engage young people in the process. Experiences of ACPfYP were also dependent on the

information available for these different groups during the process, and this will comprise

the following sub-theme.

6.4.2.4 Support and information available during advance care planning for young people (ACPfYP)

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This sub-theme explores the support and information available for young people and their

parents/carers, and for HCPs involved in ACPfYP. This includes both written and verbal

information that is available to everyone during the process of ACPfYP, and how this

facilitates or obstructs the engagement of young people. To understand this sub-theme,

findings are split into the support and information available to young people, and their

parents/carers; and the support and information available for HCPs.

6.4.2.4.1 Support and information for young people, and their parents/carers

Andrew (Young Person) felt he did not have enough written information at the beginning of

his ACP, although this changed as he grew older:

’I think at first it wasn’t really discussed with me quite a lot. As I got older I seemed to get more information’ (Andrew, Young Person, lines 138-139).

Although Andrew (Young Person) was provided with a booklet, he felt that support mainly

came from people in and around his family:

‘my Nan and stuff like that [and] a support worker that helped us quite a lot’ (Andrew, Young Person, lines 198 and 203-207).

Support and written information had improved for Andrew (Young Person), but he was still

unsure about who to access for support if he had any questions:

‘to be honest, at the moment I’m not really sure who’s in charge of it ’ (Andrew, Young Person, line 269).

Andrew’s view was corroborated by Elizabeth (Grandparent):

‘No there was no [information] it was just that we knew. Nobody discussed it again’ (Elizabeth, Grandparent, Andrew’s case study, lines 602 and 608).

The lack of available support in Andrew’s case study might be explained by John (Consultant

Paediatric Neurologist), who felt information was not provided due to his previous

experience with other families:

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‘it’s not that helpful. When I’ve done this in the past it emerged that it’s not read. [Instead], I urge them to discuss things directly. I don’t think this [ACPfYP] is a leaflet kind of operation’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 694-695, 703-704 and 708).

John spoke of young people and their families being able to access information on the

internet. However, it appeared that people were left to find their own information rather

than being signposting towards it.

In Bartholomew’s case study, there also appeared to be a shortage of written information

for the young person and their family. Bartholomew (Young Person) said written and verbal

information for his ACP had not been provided. James (Parent) added that Bartholomew’s

shyness resulted in James talking to professionals on Bartholomew’s behalf. Disjointed

communication of Bartholomew’s ACP was also recognised as a barrier to engaging young

people and their family:

‘sometime doctor believe or specialist believe Bartholomew need this thing or that thing. The social side, they don’t know what we need or what to do, [or] what doctors [to contact], so it’s like a broken links [sic]’ (James, Parent, Bartholomew’s case study, lines 682-686).

The lack of written and verbal information has caused anxiety:

‘we don’t know if something goes wrong, where to go. We don’t know what to do, we just know that we dial 999, that’s it, don’t know anything further than that’ (James, Parent, Bartholomew’s case study, lines 237-238 and lines 257-259).

The lack of written information and support during Bartholomew’s ACP was corroborated by

HCPs. Eve (Consultant Respiratory Physiotherapist) said young people and parents are

generally directed away from websites:

‘we definitely address them to the organisations themselves’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 509-510).

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This opinion supports the view that young people and their parents/carers often look for

information and support to facilitate the engagement of young people in their ACP when it

is not provided:

‘we find some support group and charities like Action Duchenne’ (James, parent, Bartholomew’s case study, lines 670-671).

Eve (Consultant Respiratory Physiotherapist) stated that although Bartholomew’s ACP was

based on providing information verbally, she recognised the need for further support:

‘[Bartholomew’s ACP] was definitely just speaking…[but]…there’s a massive need for peer support’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 498 and 527-528).

Peter’s case study reported a similar experience, in that written support and information on

ACPfYP was not always available and depended on the level of staffing:

‘it varied with what staff are on wards’ (Lydia, Parent, Peter’s case study, lines 239-240).

In contrast to Bartholomew’s case study, Lydia (Parent) believed somebody was always

available to talk to if she needed support. Similarly, in Peter’s case study, Mary (Hospice

Clinical Manager), indicated a willingness to find relevant information but also an honesty

that such written information might not be available:

‘we’d possibly have some information within the hospice, but we would get that information for them’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 534-535).

Likewise, in Peter’s case study, Ruth (Consultant Paediatrician) believed information sheets

existed and can be given to parents; and Sarah (Paediatric Palliative Care Consultant) agreed

that Peter’s ACP was based on discussions but acknowledged that written information was

usually reserved for professionals. These views are similar to those of John (Consultant

Paediatric Neurologist) – HCPs are encouraged to talk directly with young people and their

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families rather than written information being provided for patients to take away with

them:

‘if we use them [leaflets] at all it’s often I’ll ping them to [consultants]…we don’t give out lots of information about [ACP]…we will…try and go through that face-to-face with the family in the first instance’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 498-499, 503 and 505-506).

In Miriam’s case study, there was general agreement that written information about ACPfYP

was not always helpful. Instead, Rachel (Parent) preferred verbal information given in a

face-to-face situation:

‘when they [HCPs] gave the leaflet, I thrown [sic] them back…you tell me the information, I’m asking you the questions’ (Rachel, Parent, Miriam’s case study, lines 725-726 and 727-728).

Rachel’s preference for personal, first-hand contact was recognised by Hannah (General

Paediatrician):

‘I think with Rachel [written information] wouldn’t have been very useful because at one point she didn’t even want to read what was in [the ACP] she was just like, I trust you, you write it and I’ll sign it’ (Hannah, General Paediatrician, Miriam’s case study, lines 377-379).

Therefore, offering written information to young people and their parents/carers is not

always suitable. Yet having some material available, or to direct them towards, may be

beneficial for those who want it:

‘I think a website or information leaflet is perfect for some of my children that might end up going down that route because their parents want to know the in-and-outs of everything’ (Hannah, General Paediatrician, Miriam’s case study, lines 374-376).

Therefore, written information and support was generally desired by young people and their

parents/carers, but it was not always provided. HCPs acknowledged written support and

information was sometimes available, but some HCPs reserved this for other professionals

initiating and using ACPfYP rather than for young people and their families. The following

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section will present the data about information and support available for HCPs during the

ACPfYP process to provide a full view of the written information and support identified by all

participants.

6.4.2.4.2 Support and information for healthcare professionals (HCPs)

There were differing opinions from HCPs when exploring the support and written

information available for them to initiate and use ACPfYP. These views were split by amount

of experience, with those who were more experienced believing written information and

support was readily available:

‘Oh yeah absolutely’ (John, Consultant Paediatric Neurologist, Andrew’s case study, line 888).

Other HCPs felt written information and support was not always available for them:

‘absolutely not’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, line 746).

Matthew, a more experienced HCP than Eve, also acknowledged there is not much support

for HCPs, but there were,

‘different channels where I can get help’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 891).

This difference in available support for professionals was explained by Sarah (Paediatric

Palliative Care Consultant), who felt that HCPs need to be proactive if they want

information:

‘you have to go out and find it, you really have to go out and find it, and that often is [like] pulling together bits of a jigsaw really’ (Sarah, Paediatric Palliative Care Consultant. Peter’s case study, lines 827-829).

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In Peter’s case study, Mary (Hospice Clinical Manager) and Ruth (Consultant Paediatrician)

felt training for HCPs was available but significant problems existed around the cost of the

attending courses:

‘there are courses I think [but there is] an expense with those so it’s not always that practical really’ (Ruth, Consultant Paediatrician, Peter’s case study, lines 708-710).

Overall, there were varied opinions about the support and information available for young

people, their parents/carers and HCPS during ACPfYP. Young people, their parents/carers,

and inexperienced HCPs believed there was a shortage of information and support. Some

HCPs, suggested more support and written information would be valuable for young people

and their families. However, levels of support and written information for HCPs were

inconsistent. Some professionals, often the least experienced, were unsure of how to access

support and written information, while their more experienced colleagues believed HCPs

should use their initiative to find sources of help.

6.4.2.5 Process and documentation of ACPfYP

This sub-theme has two sections, which present findings separately on the process of

ACPfYP and the format of documentation used to record discussions.

6.4.2.5.1 Process of advance care planning for young people (ACPfYP)

In Andrew’s case study, ACPfYP was based primarily on discussions. Andrew (Young Person)

said that he was happy with this approach:

‘a lot of it was about medication and stuff like, that and things I need to do myself” (Andrew, Young Person, lines 181-182).

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Elizabeth (Grandparent) was unsure if ACP had taken place for Andrew. Susannah (Carer)

was also hesitant about the full documentation of Andrew’s ACP but acknowledged that

discussions were probably recorded in Andrew’s medical notes:

‘I don’t think there’s anything written in place…Not from recently, [but] I think it is down on his medical notes’ (Susannah, Andrew’s case study, lines 266-267 and 273).

These views contrasted with those of John (Consultant Paediatric Neurologist), who

indicated Andrew’s ACP discussions had been formally documented:

‘I drafted a written document which they read through…we made some changes and we looked at it again but…openly discussed about [medical intervention]’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 543-545).

In Bartholomew’s case study, James (Parent) felt that documenting ACPfYP is important to

keep everyone in the process informed:

‘[Documenting ACPfYP is] a good idea because everyone’s aware about the situation’ (James, Parent, Bartholomew’s case study, lines 341-342).

Allowing enough time for ACPfYP discussions may involve arranging follow-up meetings if

young people and their parents/carers are not ready to engage in discussions:

‘if you ever feel at any point you feel as though they’re not ready to give them documents then leave it with them, let them go through it but then make sure you organise a further follow up with them, whether that be in their home or in clinic, to discuss it with them again’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 386-389).

Nevertheless, it appeared that Bartholomew’s ACP had not been documented despite initial

discussions and the agreement of all parties that ACPfYP is an important process.

‘we don’t have any documents, we never heard from anywhere that we should have’ (James, Parent, Bartholomew’s case study, lines 214-215).

Matthew (Consultant Paediatric Neurologist) agreed with James (Parent) and said that he

approached parents for initial discussions. Documentation of ACPfYP was a secondary

thought:

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’I probably in the first instance would just have a free conversation and have a chat and a talk…through things…[and] only at a later stage kind of compile a…more official document’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 740-41 and 746-747).

This conversational approach to ACPfYP was also followed in Peter’s case study, where Mary

(Hospice Clinical Manager) and Sarah (Paediatric Palliative Care Consultant) both believed

notes and discussions should come first, and documenting ACP was secondary:

‘the document is just a way of writing it down and it’s a way of checking if there’s any bits and pieces you might have missed (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 177-178).

This verbal foundation of ACPfYP might be why John (Consultant Paediatric Neurologist) and

Ruth (Consultant Paediatrician, Peter’s case study) said the process was based on as many

discussions as it takes. However, to avoid a lengthy process of discussion there also needs to

be a clear stage when the discussions are documented.

The process of ACPfYP also needed to be personal and tailored to the individual young

person:

‘[It is] little things like this little detail I think that matters’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 306-307).

Rachel (Parent) was one of four participants who recognised the individual nature of ACPfYP

and felt that the process should be person-centred. Rachel summarised this sub-theme

when she said,

‘everyone acts different, we’re all in different boats…[ACPfYP is] very, very personal, and it’s what you decide you want’ (Rachel, Parent, Miriam’s case study, lines 570-571 and 590-591).

From a parent’s point of view, Rachel (Parent) recommended a simple, stepped process to

include some of the points identified by HCPs:

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‘think about it [ACPfYP], make notes, get an appointment with your consultant and tell him you want to discuss advance care planning…get a new consultant, and go and…sit down with your consultant and make sure he’s taking notice, make sure you get appointment prompts and he’s actually listening…you need someone there backing you and understanding what you’re saying…you need someone who actually understands what you’re going through’ (Rachel, Parent, Miriam’s case study, lines 1576-1581, 1583-1584 and 1587-1588).

Rachel (Parent) described her frustration at how Miriam’s ACP had been backwards and

forwards between different HCPs, which amplified her frustration:

‘I thought for God’s sake…mine’s always getting revised’ (Rachel, Parent, Miriam’s case study, lines 485 and 1312).

Dissatisfaction in the ACPfYP process was not mirrored by Hannah (General Paediatrician),

but she did recognise the value of basing Miriam’s ACP on initial discussions because of

concerns if information was recorded:

‘Rachel [Parent] has…concerns regarding information-sharing...she doesn’t want everyone knowing her business…she was very reluctant to have it written down on a piece of paper’ (Hannah, General Paediatrician, Miriam’s case study, lines 141-143).

It appeared from the case studies that initial discussions were beneficial to the engagement

of both young people and their parents/carers in the process. Documentation of ACPfYP was

aided when these initial conversations had taken place but there was still uncertainty for

some parents and HCPs about the timing, and format, of documenting ACPfYP.

Consequently, young people’s ACP was not fully documented in every case study, despite

initial discussions taking place. The next sub-theme will explore how ACPfYP is documented

and the paperwork used to record discussions.

6.4.2.5.2 Documentation of ACPfYP

Standardised document was not used to record ACPfYP discussions in every case study. John

(Consultant Paediatric Neurologist) indicated there may be significant problems with the

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current documentation used to record ACPfYP; he believed the increasing use of the Child

and Young Person’s Advance Care Plan (CYPACP) needed clarification, and raised a number

of objections to its use:

‘over and over again people say why do we need sixteen pages…[A] big criticism is the last page…One family described it as an insult… the…sixty, seventy page one [document], is not an optimal…document’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 827, 849 and 1538-1539).

These criticisms led John (Consultant Paediatric Neurologist) to develop his own methods

for documenting ACPfYP. He recorded wishes under different relevant sub-headings in a

word-processed document, and clearly logged the wishes of the young person in different

scenarios. At the end of the document, there was a list of different organisations and

individuals to whom the ACP was distributed, and the signatures of the individuals involved

in the discussions. Viewing the document revealed the simplicity of the format: at just two

pages long, it was straightforward and comprised of text which was separated into clearly-

defined paragraphs under distinct sub-headings. There were no tick boxes or spaces for

handwritten comments; every comment and revision was recorded using the word

processor. John (Consultant Paediatric Neurologist) felt this format included all necessary

and relevant information for ACPfYP and so avoided a lengthy document.

In Bartholomew’s case study, Eve (Consultant Respiratory Physiotherapist) stated that no

documentation was used exclusively for recording ACPfYP discussions. Documenting ACPfYP

needed to be adapted for young people with different conditions:

‘there’s no specific paperwork [and current documentation is] ultra-built around the cancer networks’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 572 and 716-717).

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Another HCP in Bartholomew’s case study said her NHS Trust used documents from outside

the NHS. Documentation had been adapted from paperwork used for a specific condition:

‘I think ours is mainly based on the one that the…MND [Motor Neurone Disease] patients use from the MND Association because it’s quite easy to fill in ’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 432-433).

These views were contradicted by Mary (Hospice Clinical Manager), who stated she used

standardised documentation because of the need to share information and ease of sharing

it in a format everyone recognised:

‘it made no sense for us to…use our own because…the document needs to be recognised…wherever the child goes’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 589-591).

Other HCPs in Peter’s case study supported more standardised documentation. Sarah

(Paediatric Palliative Care Consultant) said that the written stage of ACPfYP needed to be

recorded in a consistent and uniform document because it was shared with, and needed to

be recognised by, a variety of people. In this sense, ACP documentation needed to be,

‘quite a clinical, box-tickingy [sic] sort of document because that what it needs to be’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 552-553).

For this reason, the CYPACP which is being used increasingly across the UK was regarded by

some HCPs as the best documentation for ACPfYP.

‘[The CYPACP is] probably as good as it can be…[despite a]…few niggles’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 564-566).

The majority of views from participants across the four case studies were contrasted with

Miriam’s case study, in which Rachel (Parent) was unsure which documentation was used:

‘it’s not the Liverpool Pathway, it’s not…the purple piece of paper, do not resuscitate, because you can’t have them for kids’ (Rachel, Parent, Miriam’s case study, lines 974-976).

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Hannah (General Paediatrician) agreed with the views of HCPs in Peter’s case study that

ACPfYP documentation should be flexible, but also in a format which is easy to share with

other people. Hannah could not remember whether the documentation she used was

developed by a colleague or was simply standardised documentation used across the

region, but she recognised the benefits of having ACPfYP documentation which was both

electronic and generic:

‘it asks you the…the basic questions sort of thing and you can add, things as you need to’ (Hannah, General Paediatrician, Miriam’s case study, lines 350-351).

One problem that Hannah identified with the ACPfYP paperwork she used was that,

‘there’s no sort of set up of…who that goes to’ (Hannah, General Paediatrician, Miriam’s case study, lines 350-352).

Therefore, there were different views of existing ACPfYP documentation. Some HCPs felt

documentation should be standardised, and current paperwork is satisfactory. Other HCPs

had amended pre-existing documentation to meet their needs and ease the sharing of

information. One HCP has gone as far as creating his own documentation. Although the

current paperwork may not be perfect, HCPs who reported using the CYPACP

documentation generally felt it fits its purpose. Sarah (Paediatric Palliative Care Consultant)

summed it up by saying,

‘I don’t love it but I don’t hate it’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, line 584).

When young people have an ACP in place, it might be expected there would be a noticeable

difference in their care. The next sub-theme will explore the views and experiences of young

people, their parents/carers, and HCPs regarding the impact of the young people having an

ACP in place.

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6.4.2.6 The impact of ACPfYP on care

Thirteen participants across three case studies indicated that ACPfYP had an impact on

young people, their parents/carers, or HCPs. The effect of ACPfYP was different for

participants across the case studies. This sub-theme will outline the impact of ACPfYP these

participants identified.

Andrew (Young Person) said ACPfYP was important for his self-confidence because it

provided reassurance his future care needs had been considered:

‘[ACPfYP] gives me a bit of confidence…that there’s things in place if things were to go wrong’ (Andrew, Young Person, lines 235 and 239).

Similarly, Elizabeth (Grandparent) said ACPfYP acted as more of a back-up mechanism rather

than making a noticeable difference to daily care: In this sense, ACPfYP was for,

‘when Andy gets really bad’ (Elizabeth, Grandparent, Andrew’s case study, line 446).

Matthew (Consultant Paediatric Neurologist) spoke about ACPfYP helping to improve the

care of young people. Engaging the young people in ACPfYP, and discussing their wishes and

care needs, helped positively impact on their health:

‘And all we do is support them in that and try and make the best of their lives in…that context’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 1142-1143).

The provision of support was enabled because ACPfYP helped bring together the HCPs, and

highlighted the care needs of the young people. The professional input offered new

approaches to treatment and engaging young people in ACPfYP:

‘…the adult team has come on board and maybe have a slightly different approach’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 1175-1176).

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Furthermore, ACPfYP improved multi-professional working in two of the case studies. Sarah

(Paediatric Palliative Care Consultant) highlighted that multi-professional working resulted

in a greater understanding of young people’s current and future care needs, and their

wishes for the future:

‘…hopefully it meant that everyone was a little bit more aware of what was going on’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 734-735).

The involvement of a range of professionals in ACPfYP helped the identification of key

people, and potential gaps, in HCP involvement:

‘it does help you focus on in terms of who’s involved, when you do that advance care plan and you kind of say right, who’s the GP, who’s the lead consultant, who’s the lead, who’s the key worker, who’s actually…holding those reigns and…if there isn’t anybody, who could be, or should be, and how do you support them and empower them to take on that role’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 791-795).

HCPs across three case studies also identified that ACPfYP had positively impacted on

communication. The nature of ACPfYP meant sensitive feelings were discussed, future

treatment options were considered, and relationships developed between all people in the

ACPfYP process.

‘…communication improves…it’s such an intimate…[time for] discussions and you meet so frequently’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1318-1319).

John (Consultant Paediatric Neurologist) also identified a positive impact on the family’s

emotional burden, and a relief that the young person participates in ACPfYP. These factors

combine to mean,

‘their families take great reassurance’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 588-589).

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One HCP felt discussing sensitive issues about future care and the deteriorating condition of

young people prepared everyone involved in ACPfYP for end-of-life, thereby improving

opportunities for future improvement in communication:

‘I think in the long-run, [ACPfYP discussions] definitely help ease [talking about death]’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 537-538).

This experience was supported in Peter’s case study by recognition that ACPfYP identified

support needs for the family:

‘issues around…how mum was supported, who else was available to support her, and stuff between mum and dad’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 753-754).

Despite the majority of participants believing ACPfYP has a positive impact on the

engagement of young people, a third of participants (n=5), across three case studies, felt

ACPfYP had not made a difference to the care provided to young people:

‘we don’t tend to see differences in his care’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, line 466).

For this reason, ACPfYP may have a long-term benefit rather than a short-term effect.

ACPfYP was seen as a process to record and transfer personal information between services,

which in turn can facilitate future discussions about care:

‘having that sort of passport function of an advance care plan means that we’ve still got a way in [for future discussions]’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 167-168).

As the main impact of ACPfYP was reassurance about future care and the consideration of

the future wishes of young people, some ACPs were rarely referred to. Consequently,

ACPfYP was viewed as a safety measure to plan for future care needs:

‘they [young people and parents/carers] can just feel safe, just put it [the ACP] in a drawer somewhere, put it to the back of your mind, carry on ’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 541-543).

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Lydia (Parent) agreed that ACPfYP involved planning for the deterioration in the condition of

young people:

‘I suppose…[it’s] kind of there as a sort of back-up [for] when he deteriorates, if he deteriorates then…it can kick in’ (Lydia, Parent, Peter’s case study, lines 880-881).

In Miriam’s case study, both Rachel (Parent) and Hannah (General Paediatrician) believed

they would not expect to see any changes in the care and treatment of Miriam (Young

Person). Nevertheless, Hannah (General Paediatrician) spoke about the impact of the

ACPfYP on some of Miriam’s carers:

‘[There was no impact on Miriam’s care but] the carers have been a bit more jumpy’ (Hannah, General Paediatrician, Miriam’s case study, line 518).

Hannah attributed the anxiety of carers to a misunderstanding of ACPfYP, and a perception

that a deterioration in Miriam’s condition should result in hospitalisation and increased

administration of drugs:

‘the education side of it [ACPfYP], from the carers’ point of view, isn’t there’ (Hannah, General Paediatrician, Miriam’s case study, lines 538-539).


There were varied experiences of ACPfYP across the cases studies. Participants agreed that

ACPfYP is best initiated when the young person was in their mid-teens, but this did not

always happen practice. Any HCP could identify triggers to initiate ACPfYP, although the

process was best initiated by consultants as part of a multi-professional team to help engage

young people and their parents/carers in discussions about future wishes and care. Written

information and support was not always available for everyone during ACPfYP, which

impacted on their experiences of the process. Similarly, not every ACPfYP discussion was

documented, and participants agreed that documentation should be in a format which can

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be easily shared. ACPfYP is not likely to create a noticeable change in existing care of young

people, but there was general agreement across the cases that ACPfYP can reduce anxieties,

and provide opportunities to discuss future care. Conversely, some evidence suggested

ACPfYP can also increase anxieties around how personal information about young people,

and their families, is shared. The next theme presents participants’ views of communication

during the process of ACPfYP.

6.4.3 THEME 3: COMMUNICATION

This theme presents the findings related to communication in ACPfYP. To understand the

role of communication, and whether it created a barrier or a facilitator to the engagement

of young people in their own care planning, this theme outlines the views of different

participants regarding the importance of communication in ACPfYP. There are two sub-

themes to present the data: firstly, parental advocacy, to enable the recognition of parental

gatekeeping in the ACPfYP process; and, secondly, communication within ACPfYP, to

consider how communication should ideally be used within ACPfYP. This theme contributes

to all three of the study’s objectives by outlining the views and experiences of participants,

the timing of initiating ACPfYP, and identifying barriers and facilitators to engaging young

people in their own care planning.

6.4.3.1 Parental Advocacy

The role of parents in ACPfYP was varied across the case studies. This sub-section outlines

these different roles to understand whether they were a barrier or facilitator to the

engagement of young people in ACPfYP.

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In Peter’s case study, Lydia (Parent) and Ruth (Consultant Paediatrician) recognised effective

communication as an important aspect of ACPfYP. Lydia stated that communication was an

evolving process which was dependent on the relationship she had with her non-verbal son:

‘being his mum for sixteen years, his parents for sixteen years…we just know his personality, we know his outlook on life, we know what he likes doing…I’ve got…an understanding, which I think would be the same with any parent and child…it’s just a feeling’ (Lydia, Parent, Peter’s case study, lines 161-163 and 188-190).

Lydia’s experience was shared by another parent, who described why she can best

communicate and understand the needs of her non-communicative daughter:

‘I’ve lived her [life] for fourteen years…She’s mine and I feel I do the best for her’ (Rachel, Parent, Miriam’s case study, lines 1094 and 1098).

Communication is also about relationships between the young people, their parents/carers,

and HCPs. Rachel (Parent) discussed how she had taken the initiative in some aspects of

Miriam’s ACP discussions:

‘I will open me mouth [sic] if I don’t like someone’ (Rachel, Parent, Miriam’s case study, lines 1257-1258).

Similarly, there were concerns about a lack of trust when discussing ACPfYP with some

HCPs:

‘you say one thing to one nurse and it’s round the bloody building’ (Rachel, Parent, Miriam’s case study, lines 855-856).

Rachel (Parent) explained there were some HCPs she would openly communicate with, but

there were some HCPs with whom she would avoid sharing information. Rachel (Parent)

saw ACPfYP discussions as private and confidential which should not be shared with anyone

other than necessary:

‘you speak to your consultant, he lets who know needs to know and that’s it and it never gets repeated’ (Rachel, Parent, Miriam’s case study, lines 856-858).

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However, some HCPs viewed this approach as parental gatekeeping, which created a barrier

to the engagement of young people in ACPfYP:

‘there are a number of parents that protect their children from what’s going on with them [by keeping information from them]’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 274-275).

Another HCP felt communication with gatekeepers was important to help engage them in

ACPfYP:

‘[The role of the HCP involves] trying to give them [parents] some very basic communication skills in terms of saying, actually…rather than trying to fix it, have a listen, try and get them to talk a bit more’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 1003-1005).

Parental advocacy was sometime viewed as an opportunity to develop lines of

communication. However, parental advocacy was more frequently seen as gatekeeping,

which created a barrier to young people’s engagement in ACPfYP. This topic will be

discussed further in the relationships theme below (page 198). The following sub-theme

identifies characteristics of effective communication to facilitate the engagement of young

people in ACPfYP.

6.4.3.2 Communication within advance care planning for young people (ACPfYP)

Communication was a central theme in all four case studies, and revolved around

communication between young people and their family, communication between HCPs, and

communication between all people involved in ACPfYP. Therefore, it was important to

understand the experiences of this communication as identified by participants.

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Experiences of communication in Andrew’s case study were mixed between different

participants. Andrew (Young Person) believed communication about his ACP had ‘been

alright’ (Andrew, young person, line 254). This contrasted with his grandmother’s view that,

‘no-one’s ever talked to me about end-of-life care’ (Elizabeth, Grandparent, Andrew’s case study, lines 454-455).

Elizabeth’s experience was mirrored by Susannah (Carer), who felt communication in the

ACPfYP process had not been clear:

‘I don’t think it was really discussed, or anything’s really discussed…I think it’s just taken for granted that they’ll [HCPs] try their best’ (Susannah, Carer, Andrew’s case study, lines 139 and 145).

The HCP in Andrew’s case study spoke about the importance of honesty and openness

during ACPfYP. Combining sensitivity and honesty in communication helped build trust in

the relationship:

‘[Communication in ACPfYP should] transmit this high level of, not just confidence, but also empathy and interest…people appreciate this highly’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 935-936 and 938-939).

The age of the young person was also identified as an influencing factor in their engagement

in ACPfYP. A young child is sometimes unable to communicate concepts of care, treatment

and death, and four participants across all four case studies felt it might be more

appropriate to judge ability to engage by level of maturity rather than purely by age:

‘you can start advance care planning at a kind of very young age…the youngest probably ten, eleven, nine, I’ve one six-year-old’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 182-184).

Moreover, it was also recognised personal and individualised communication needed to be

present within the documented ACPfYP as well as within the discussion stage of planning:

‘…there’re certain wordings I wouldn’t put into an advance care plan because they are not personalised’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 787-789).

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John (Consultant Paediatric Neurologist, Andrew’s case study) felt his communication skills

could be attributed to his experience of working with young people who have LLCs.

Nevertheless, he recognised some of his colleagues were not comfortable when discussing

ACPfYP and potential EoL issues with young people. Where colleagues might be engaged in

discussions, there was uncertainty about whether they would be comfortable to lead on

ACPfYP discussions:

‘There are people [within the team] who just feel uncomfortable [talking to young people about ACPfYP]’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 348-349).

John (Consultant Paediatric Neurologist, Andrew’s case study) distanced himself from his

more hesitant colleagues and read from a portion of Andrew’s ACP which detailed the plan

has been distributed to 15 different people and organisations, including Goldville House

Children’s Hospice. This view contrasted with the information gathered to conduct

interviews for stage two of Andrew’s case study when Goldville House Children’s Hospice

did not have a record of Andrew’s ACP.

The varied experience of communication in ACPfYP was also apparent in Bartholomew’s

case study. The inability of Bartholomew (Young Person) to accurately remember and clearly

convey his experiences meant he was unable to recall the extent to which communication

had impacted on his experience of ACPfYP. However, James (Parent) felt communication

had been informal, and was able to engage him and Bartholomew (Young Person) in ACPfYP

because the process helped educated the family about Bartholomew’s condition. Although

James believed HCPs had explained everything to the family, it was not clear what was

meant by ‘everything,’ particularly as he expressed some anxiety about the future:

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‘we don’t [know] about the future plans or we don’t know what to do…if [something] goes wrong’ (James, Parent, Bartholomew’s case study, lines 336-337).

Joanna (Ventilation Specialist Nurse) felt that clarity of language was important to be able to

express complex ideas and communicate sensitively with young people and their families:

‘you’ve got to be honest [and] ‘try and word it in a way which they understand’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 381 and 385).

This view was echoed by Matthew (Consultant Paediatric Neurologist), who said

communication in Bartholomew’s case study had not always been ideal:

‘that does make me think again that I didn’t talk to [Bartholomew] about advance care planning’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 1267-1268).

This opinion of communication differs to that of Joanna (Ventilation Specialist Nurse), who

believed there was good inter-professional communication during Bartholomew’s ACP:

‘we do lead a lot now with the Policies Care Team with our patients who we do tend to get them on board as well [and] we do liaise a lot with the hospice teams’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 343-344 and 354-355).

Lydia (Parent) shared her experiences of the difficulties when HCPs communicated with a

non-verbal young person:

‘of course they didn’t understand [Peter’s dystonia]…so they misinterpreted it…unfortunately that has happened a lot with Peter and it’s led to…us not being listened to’ (Lydia, Parent, Peter’s case study, lines 262-265 and 277-278).

This barrier to engagement was particularly worrying for Lydia as misinterpretation and

miscommunication resulted in wrong medication being administered to Peter, and a

misdiagnosis on at least one occasion. Furthermore, she felt the process to update Peter’s

ACP had taken too long and no-one mentioned his plan when Peter’s health was relatively

stable:

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‘[Peter’s ACP] had got, like, eighteen months out of date…I feel…because Peter had then gone like back into quite relatively good health’ (Lydia, Parent, Peter’s case study, lines 561-563).

Lydia’s views contrasted with the HCPs in Peter’s case study. For example, Mary (Hospice

Clinical Manager) said there was a detailed section in Peter’s ACP about communication.

Consequently,

‘we know Peter well…we’re able to tell from his behaviours…and his responses to things’ (Mary, Hospice Clinical Manager, Peter’s case study, line 348).

Furthermore, two HCPs concurred that skill levels of individual HCPs had a bearing on the

quality of communication during the ACPfYP process:

‘with that experience comes the ability to have those difficult conversations ’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 621-623).

Communicating with young people was related to their level of maturity, as well as their

general level of understanding of the concepts and terminology, and could so impact in the

engagement of young people in their ACP:

‘[Engagement] depends on the maturity of the child, doesn’t it, how you think they’d handle it’ (Lydia, Parent, Peter’s case study, lines 1009-1010).

Developing empathy also facilitated HCPs’ ability to tap into the emotions of other people

during the process of ACPfYP and pick up on triggers in the conversations:

‘…so I remember a young lady saying to me, I don’t think I’m ever going to kiss a boy and then, rather than kind of dismissing it [and saying] oh don’t be silly, of course you will, you’re then saying, no, hang on a minute, what’s made you say that?’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 996-1000).

The need to recognise and pick up on triggers in conversation was important to ease

communication and facilitate the engagement of young people by involving them in ACPfYP

discussions. Sometimes the trigger can include periods of silence or disjointed conversation.

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The skills of HCPs are required to identify which silences are triggers and which require a

sensitive approach to keep ACP discussions moving forward:

‘just try and gently, gently, gently keep those discussions going’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 1038-1039).

Similarly, effective communication was felt to include HCPs employing skills of active

communication:

‘think about the communication and the active listening… hear and take on board preferences, choices, hopes and fears’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 884 and 887).

Direct communication helped young people and their parents/carers understand how the

young person’s condition will progress and what their future options are in terms of care

and treatment:

‘when you don’t know something, you don’t make it up…that seems to work extremely well with Rachel [Parent] as well because I think she respects that’ (Hannah, General Paediatrician, Miriam’s case study, lines 547-549).

Meanwhile, Ruth (Paediatric Consultant) felt communication between HCPs was difficult at

the start of the discussions, but improved as the ACP process progressed:

‘[Communication was] generally not too bad I suppose, like I say, we did have initial struggles’ (Ruth, Paediatric Consultant, Peter’s case study, lines 760-761).

In Peter’s case study, there were also complications of working in a multi-professional team

across different sites. Although it was recognised a team of different HCPs benefitted

ACPfYP, because of the expertise a variety of HCPs brought, the separate geographical

locations of care provision also brought its challenges:

‘by the time we get clinic letters it’s often a few weeks after or sometimes we don’t always get them’ (Ruth, Consultant Paediatrician, Peter’s case study, lines 106-107).

Transition was another factor which complicated the communication between HCPs:

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‘[Communication between HCPs] sometimes slips through the net…during this transition phase’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1816-1817).

Therefore, effective communication should be focused on building mutual respect and trust

to help guide ACPfYP discussions and facilitate the engagement of young people in the

process. Communication needs to be timely, open, and honest between all participants and

HCPs, particularly, need to employ active listening skills to ensure they both hear and record

the wishes of young people and their parents/carers.


Parents/carers, HCPs, and verbal young people across all four case studies indicated there

were some clear barriers and facilitators to good communication: barriers included

communication with young people which was not personal and individualised, and

geographical distance between HCPs working as part of the multi-professional team;

facilitators included honesty, openness, sensitivity, and empathy. As advocates, parents

were more frequently seen as a barrier to the engagement of young people in ACPfYP, but

were also recognised as important facilitators who looked after the interests of their

children. Where HCPs identified triggers in communication, opportunities were also created

to facilitate the engagement of young people, or their parents/carers when the young

people were not able to communicate their wishes. The following theme explores the

education and training for HCPs to help them initiate and use ACPfYP.

6.4.4 THEME 4: EDUCATION AND TRAINING FOR HEALTHCARE PROFESSIONALS (HCPS)

This theme outlines the perception of HCPs’ education and training which participants

believed were necessary for implementing and using ACPfYP. A related sub-theme presents

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the views concerning the access and affordability of training for HCPs. This theme

contributes to all three of the study’s objectives by outlining the views and experiences of

HCPs and their readiness for ACPfYP. Education and training can also help inform their

ability to initiate ACPfYP and engage young people in the process.

6.4.4.1 Perception of healthcare professionals’ (HCPs) education and training

Bartholomew (Young Person) believed HCPs should have the expertise to explain his

condition and future care options. Consequently, training for consultants was important

because their expertise meant they,

‘might know what it [the condition] is and they can explain what it [the condition] is [and] what changes they can do [sic] [in future care]’ (Bartholomew, young person, lines 316-317).

John (Consultant Paediatric Neurologist) felt he was in the best position to explain future

potential care and treatment because of his level of experience and expertise:

‘I’ve been working in this field for many, many years…[and] I know this patient group inside out’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 899 and 906).

Professional competence can also depend on personal characteristics as well as education

and training. A key aspect of successful ACPfYP is the skill level of HCPs involved in the

process:

‘you need elite clinician who is informed and knowledgeable…[because]… we’ve got insights…and experiences other people just haven’t’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1665-1666 and 1379-1380).

Despite the potential expertise of both individual HCPs and the multi-professional team (see

(sub-theme: people involved in ACPfYP page 162), some HCPs doubted their own

professional competence when it came to leading ACP:

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‘I don’t know if I do enough of it and I still don’t know what the right thing to do…I do feel maybe [not discussing ACP with young people at an earlier age]’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 205-206).

John (Consultant Paediatric Neurologist) and Sarah (Paediatric Palliative Care Consultant)

felt HCPs can be taught certain skillsets. However, both HCPs argued that empathy is

difficult to teach to someone who has no empathy to begin with:

‘there will be some people who will be intrinsically always uncomfortable with those sorts of discussions’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 408-409).

These experiences contrasted with those of James (Parent) who identified poor services in

some areas of healthcare:

‘GPs…the services are worse than ever’ (James, Parent, Bartholomew’s case study, line 387).

The result was contrasting views of ACPfYP between HCPs and parents/carers. Some HCPs

agreed with parents/carers that their skill sets can be improved, but other HCPs felt they

were leaders in their profession. However, it is important to understand HCPs’ opinions

about the access to and affordability of training and how this impacts on their professional

competence.

6.4.4.2 Access to, and affordability of, training for HCPs

There were two distinct attitudes to current training opportunities for HCPs. Firstly, different

HCPs across two case studies felt training was available and they knew where, and how, to

access opportunities.

‘I know exactly where to go’ (John, Consultant Paediatric Neurologist, Andrew’s case study, line 960).

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Similarly, the most experienced HCP in Bartholomew’s case study agreed that she readily

engaged in opportunities for development:

‘[I’m engaged in] self-awareness and reflection and stuff…I’m always learning, I’m picking up stuff and observing other people, learning how they do stuff…[I also have] professional colleagues up and down the country who I’ll…work with’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 428-430 and 861-862).

This opinion was supported, although slightly more tentatively, by a consultant in

Bartholomew’s case study:

‘I think I would feel confident [knowing where to go for support, advice or training]’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 250).

These views contrasted with the opinions of other, less experienced and less senior, HCPs

across the case studies. The general view was that training was not readily accessible and

courses were too expensive for organisations to afford. One HCP from Bartholomew’s case

study stated that her training opportunities were very limited. When discussing availability

of training, she was clear about her options:

‘Absolutely not…no, no…[I would like to know] where to go to…get the information or…to access the training’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 746-749).

Current training was also focused on specific conditions:

‘I would like to know, if there is any, number one, that isn’t maybe cancer orientated’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 751-752).

Similarly, two HCPs from Peter’s case study felt that training,

‘needs to be…more easily available…[and is] quite an extortionate cost’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 674 and 676).

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Some HCPs recognised the self-doubt that professionals might experience when initiating

and using ACPfYP. In periods of uncertainty, it was important HCPs turn to more

experienced colleagues for support:

‘[You need to] ask your colleagues if there’s any doubt’ (Hannah, General Paediatrician, Miriam’s case study, line 485).

A minority of HCPs (n=3) explained what training consisted of or how effective it was. In

Peter’s case study, Mary (Hospice Clinical Manager) said all senior colleagues had

undertaken training in advance communication. She also outlined training which,

‘inevitably involves a bit of role play doesn’t it…and that…is always not popular on courses’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 668-669).

In Bartholomew’s case study, both Matthew (Consultant Paediatric Neurologist) and Joanna

(Ventilation Specialist Nurse) emphasised the importance of multi-professional working to

help develop the skill level of HCPs. Matthew explained consultations were frequently run as

joints clinics to share expertise and engage young people; Joanna described how her

colleagues worked in conjunction with hospice staff to deliver relevant training to each

other about equipment and service provision:

‘we go to training there [the hospice]…we do training for them on the equipment, they do training for us’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 359-360).

Conversely, John (Consultant Paediatric Neurologist) felt he was able to lead the training

because working with young people and neuromuscular conditions was his area of

expertise. For these reasons, he stated that rather than seeking training opportunities for

himself:

‘I think probably people would come for training...to me’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 947-948).

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Further complications arose about the location of training for HCPs. Mary (Hospice Clinical

Manager) explained training courses were usually held in the city of Woodstock, which is

approximately 50 miles from the hospice. The location of training adds both a financial and

time burden to an already strained budget and workload. The obstacles to attending

training sessions led Hannah (General Paediatrician) to ask colleagues for support. Hannah’s

experience of seeking knowledge and expertise from more proficient colleagues may also

have been due to her unfamiliarity with ACPfYP:

‘really it was [a] kind of asking colleagues thing of who had experience of this. One of my colleagues works for Deepford House [children’s hospice] and Doctor Brown who works for Deepford House who’s a palliative care doctor from an adult point of view…no I didn’t feel there was enough help out there…[ACPfYP is] one of those things you kind of don’t expect to ever do really ’ (Hannah, General Paediatrician, Miriam’s case study, lines 389-392 and 395-397).

Similarly, the lack of training, or unfamiliarity with what is consisted of, led Eve (Consultant

Respiratory Physiotherapist) to seek support from peers. Her view that there was not

enough training relates to comments of more experienced HCPs that personal development

for ACPfYP has got to be,

‘much more…self-driven’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, line 866).

This opinion was shared by another consultant who felt that HCPs should,

‘ask, seek, seek advice and help that extends not just to the person who is holding the advance care plan’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 988-990).

There was agreement from two HCPs in Peter’s case study that advice from senior or more

experienced colleagues might extend to more than just conversations. It was felt that

observations of more senior and more experienced colleagues would be useful to help guide

and train less experienced colleagues in how to lead ACPfYP:

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‘[I’m always] observing other people, learning how they do stuff’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 430-431).

This strategy of educating and training HCPs could also include the mentoring of less

experienced HCPs by more experienced colleagues:

‘I suppose if you develop that mentor relationship, you’re more relaxed at sort of doing it [ACPfYP]…and learning from it’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 709-711).

There is a mixed picture of the availability and support for HCPs. Experienced HCPs

appeared to be happy with the existing level of written information and available support.

Less experienced HCPs felt training and support to help them facilitate the engagement of

young people in their ACP was not as readily available. This led to them searching for

alternative methods of support, or feeling a little lost in their use of ACPfYP. The following

sub-theme will explore the format of ACPfYP to help understand whether the process was

documented, and what documentation was used. There was a similar disparity between the

least and more experienced HCPs in attitudes to the access and affordability of training.


HCPs had different views and experiences of training. The majority (n=5) felt training was

adequate and met their needs, but others (n=3) experienced a lack of availability or

experienced barriers to accessing training courses. The absence of accessible training

opportunities resulted in some HCPs lacking confidence to initiate ACPfYP and lead

discussions. Non-HCPs recognised that communication from, or between HCPs, was

sometimes a barrier in the ACPfYP process. There was an expectation that HCPs would be

proactive in seeking relevant training and education but where HCPs were inexperienced in

initiating and using ACPfYP, there were some potential issues about developing their skill

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levels. If HCPs do not have a sufficient level of skills to comfortably initiate and use ACPfYP,

this may indicate a barrier to the engagement of young people. However, there are other

factors to consider before reaching this conclusion, and one of these, relationships in the

process of ACPfYP, will be considered in the next theme.

6.4.5 THEME 5: RELATIONSHIPS

Different participants considered effective relationships with key HCPs and professional

teams a fundamental contributor to ACPfYP and engagement of young people. The first sub-

theme sets out the relationships between young people and their parents/carers in ACPfYP.

A second sub-theme will present the relationship between the young person and their

parents/carers, and HCPs in ACPfYP. This theme relates to all three of the study’s objectives.

6.4.5.1 The relationship between young people and their parents and carers in advance care planning for young people (ACPfYP)

Relationships between young people, their parents/carers, and HCPs were sometimes

complicated by parents/carers acting as a gatekeeper. For example, Elizabeth (Grandparent)

said that she would not want to involve Andrew in his own ACP discussions until she had

met the HCPs at least once. Similarly, Lydia (Parent) explained she has never left Peter

(Young Person) in hospital. Some HCPs felt parents can default to the role of gatekeeper

rather than taking more of a long-term, pragmatic view:

‘it’s all too easy…for the parents to say I want this to happen to my child rather than taking the time…of finding the right way of communicating with the child’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 58-60).

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Whereas parents/carers, and HCPs sometimes equated gatekeeping to negative ‘blocking’

and the creation of a barrier to engagement in ACPfYP, one HCP recognised it as a positive

element of relationships:

‘there’s mutual protection going on here, you’ve got a young person who’s probably protecting their parents or their significant others…they’re all colluding, they’re all protecting each other’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 1050-1052 and 1055).

Consequently, gatekeeping instincts were recognised as essential aspects of the relationship

between the young person and their parents/carers which, despite being problematic, at

times, also had a valuable function:

‘those are important mechanisms, that are important protection mechanisms, so you don’t want to go in with your size nines and demolish it all’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 1060-1061).

A good relationship between different people within the process of ACPfYP is important for

fostering effective communication and engaging young people in their own care planning.

This relationship involved recognising young people are at the centre of ACP, and their views

should be considered throughout the process:

‘It’s him that’s having the care isn’t it…[so] we try and involve him [in all care-related decisions] as much as possible’ (Lydia, Parent, Peter’s case study, lines 1054-1055).

Peter was non-verbal and communication with him could be difficult, so the relationship he

had with his family was important for him to communicate his wishes.

‘we do wish that we could ask him, but I think, I do feel confident that we know him really, really well’ (Lydia, Parent, Peter’s case study, lines 1073-1074).

Similarly, in Andrew’s case study, Elizabeth (Grandparent) recognised that Andrew (Young

Person) saw his dad every day; and John (Consultant Paediatric Neurologist) recalled

Andrew’s dad being involved in the initial discussions of Andrew’s ACP. However, Andrew

did not mention his dad, and this might represent some conflict in their relationship.

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Elizabeth hinted tension existed when she explained who Andrew would live with when she

dies:

‘obviously it will be his Dad because he’s his kin isn’t he, but I wouldn’t like him to go living with that family, but that’s not my choice is it? ’ (Elizabeth, Grandparent, Andrew’s case study, lines 485-486).

This conflict was not apparent in either Bartholomew’s or Peter’s ACP, but potential for

tension in relationships between young people and their parents/carers was still recognised:

‘it’s not uncommon for…parents to disagree…for other family to disagree’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 240-241).

Miriam’s case study was characterised by past conflict between parents regarding Miriam’s

care. The disagreements intensified when ACP discussions began:

‘He [husband] said no, I can’t do this and I said no, you’ve got to… we got to both be saying the same thing…I spent every single day going up and down that motorway and every single day, he didn’t, it were me’ (Rachel, Parent, Miriam’s case study, lines 738-740 and lines 779-780).

Therefore, a positive relationship between the young person and their parents/carers was

important to engage them both in the ACPfYP process. Where there was conflict, reducing

tensions was important for a smooth process. Understanding the relationship between the

young person and their parents was particularly important when the young person was non-

verbal or non-communicative, as the parent was in the best position to convey their child’s

wishes. The next sub-theme will explore the relationship between young people and their

parents/carers, and HCPs.

6.4.5.2 The relationship between young people and their parents/carers, and healthcare professionals (HCPs) in advance care planning for young people (ACPfYP)

The young people interviewed for the study found it difficult to communicate their

experiences of relationships within ACPfYP. Andrew recognised that building a relationship

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with a support worker at the hospital was beneficial to his engagement, and, ‘helped us

quite a lot’ (Andrew Young Person, line 207). In contrast, Elizabeth (Grandparent) felt HCPs

she had contact with did not always meet her needs:

‘We’ve only ever had one that did anything for us in, in such a way, that was a long, long time ago…the others talk a lot but don’t seem to do anything…that’s all I can say about them’ (Elizabeth, Grandparent, Andrew’s case study, lines 333-336).

Rachel (Parent) said that there had been numerous conflicts between her and HCPs:

‘then there was another argument about resuscitation’ (Rachel, Parent, Miriam’s case study, line 211).

Yet these tensions were minimised where communication was open and honest as part of a

long-standing relationship. Part of this relationship was about trust, and this grew from prior

relationships with HCPs:

‘you have to have relationships with them [HCPs], if you don’t, you’re stuck’ (Rachel, Parent, Miriam’s case study, lines 909-910).

Nine participants across all four case studies agreed with the importance of developing

relationships with young people and their family prior to initiating ACP:

‘[ACPfYP needs to be approached] once you’ve…established a therapeutic relationship with that individual’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 855-856).

Relationships were not something that could always develop quickly:

‘most parents are okay but I think it’s because you [take time to] get to know them…[It’s important to build relationships] with the parents and child’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 640-641 and 645).

In the case of young people with complex needs, or who were non-verbal, it was important

to take time to build these relationships. In Peter’s case study, the relationship between

Lydia (Parent) and Mary (Hospice Clinical Manager) facilitated the engagement of young

people and their parents/carers:

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‘it’s taken them [HCPs] years to get to know Peter…and to understand Peter’ (Lydia, Parent, Peter’s case study, lines 1133-1134).

In Peter’s case study, these relationships developed,

‘[over] a good number of years’ (Mary, Hospice Clinical Manager, lines 369-370):

This relationship, where all sides understand each other and can talk openly and honestly,

were also recognised in Miriam’s case study as aiding effective communication and avoiding

poor communication. Accommodating the needs of each other, and building relationships

within the ACPfYP process, helped avoid misunderstandings:

‘if you don’t have that relationship, what you’re doing can be misconstrued as…you just don’t want to spend any more money on Miriam, or whatever ’ (Hannah, General Paediatrician, Miriam’s case study, lines 283-285).

Similarly, John (Consultant Paediatric Neurologist) relayed that when a young person’s care

was transferred to a team they did not have a relationship with, parents reported difficulties

and an increased emotional burden. Building relationships with unfamiliar HCPs was a

particular barrier to the engagement of young people in ACPfYP and was acutely apparent

during the period of transition from paediatric to adult care.

‘it becomes less of an emotional burden I think [if discussions take place with HCPs the family have a relationship with]…this is one of the difficulties some parents reported, that they are transferred or referred to a team they’ve never known, or they’ve never met, or team members they’ve never met…families kind of found this [happened during] transition to other teams’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 394-399 and 403-404).

The absence of a prior relationship between young people and their parents/carers on one

side and HCPs on the other side can sometime cause tensions. In Miriam’s case study,

Rachel (Parent) explained relationships have taken a long time to develop. As Miriam was

not able to communicate, Rachel spoke about the importance of building the relationship

with parents/carers:

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‘You don’t want a nurse coming up who’s newly qualified saying this is end-of-life, I’d most probably deck her…if they want to discuss my kid…they need to know me’ (Rachel, Parent, Miriam’s case study, lines 847-849 and 1508-1509).

Similarly, a parent expressed concerns regarding the future care and transition period of her

son:

‘how do you pass that on [years of knowledge built up from long-term relationships]…I don’t know how you…get to know Peter…in two years when it’s taken people sixteen years’ (Lydia, Parent, Peter’s case study, lines 1137 and 1148-1149).

There was also a danger young people were not treated as individuals in the ACPfYP process

because a relationship had not been developed with them prior to initiating ACPfYP:

‘they need to know my child…I’m not a number…she’s Miriam and if you don’t know her, don’t come near us’ (Rachel, Parent, Miriam’s case study, lines 1514-1516).

Rachel described how a consultant attempted to offer her advice, which Rachel interpreted

as an unnecessary assertion of professional power. Rachel said she was quick to take control

of the situation:

‘When she [Miriam] got poorly, this consultant walked in and I said to one of the consultants…can you remove her’ (Rachel, Parent, Miriam’s case study, lines 1250- 1252).

When the HCP tried to offer support to parents without that prior relationship being

present, the relationship was characterised by aggression and confrontation:

‘I said [to Miriam’s consultant] you lost that right…two year ago when you last saw her, so fuck off’ (Rachel, Parent, Miriam’s case study, lines 1254-1255).

Tensions in relationships between HCPs in the process of ACPfYP were also reported by non-

professionals. In Bartholomew’s case study, James (Parent) felt there was a breakdown in

the professional side of ACPfYP:

‘it’s like a broken links, more always like, it should be something like connected to each other’ (James, Parent, Bartholomew’s case study, lines 685-686).

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This view was not shared by the HCPs in Bartholomew’s case study, and conflict was not

identified by any professional interviewed. Indeed, working in a multi-professional team has

provided depth to the experience of ACPfYP.

‘[it is] really helpful is to try and work with the broader multi-professional team’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 701-702).

Therefore, there were some mixed views about the experiences of relationships across the

case studies, but there was a consensus about the importance of developing effective

relationships between the different individuals within ACPfYP to engage young people in the

process.


There were some clear indicators of relationships which facilitate or create barriers to the

engagement of young people in their own ACP. For example, gatekeeping in relationships

between young people and their parents/carers can show the strong protective feelings

they have for each other, but can also create a barrier to engagement. When relationships

between young people and their parents/carers, and HCPs, were built prior to beginning

ACP discussions, there were greater opportunities to engage young people. Gatekeeping

and tensions in relationships can also be explored to further provide opportunities for

engagement of young people.

6.4.6 THEME 6: ORGANISATIONAL STRUCTURE AND CULTURE

This theme covers a topic which was apparent during interviews with parents and HCPs.

Organisational structure and culture was related to the experiences of ACPfYP and the

engagement of young people in the process. The introduction of this topic in early

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interviews led to it being raised at subsequent interviews and the creation of a distinct

theme in the data. To help understand the data, and its impact on the experiences of

ACPfYP, separate sub-themes were created to present findings on the impact of

organisational structure and culture on ACPfYP, and the impact of ACPfYP on workloads and

resources. This theme relates mainly to the study objectives regarding the experiences of

ACPfYP, and the barriers and facilitators to engaging young people in the process.

6.4.6.1 Impact of organisational structure and culture on advance care planning for young people (ACPfYP)

The majority of parents/carers and HCPs (n=10) commented about the impact of

organisational structure and culture on the timing and engagement of young people in ACP.

Most of these views (n=9) were largely negative, with only one positive experience from a

HCP. The young people (n=2) interviewed for the study did not share any views on this issue,

as this theme was not created until after initial interviews had taken place.

James (Parent) identified organisational structure as a particular problem when caring for

his son. He spoke about IT systems being different in each hospital, and the individual

systems not being linked to each other:

‘when we go to…Westport Hospital, they don’t have any access to Ironcoast [Hospital] systems so they [HCPs] always struggle’ (James, Parent, Bartholomew’s case study, lines 277-278).

One HCP concluded that existing systems did not allow the care of young people to be

tracked and followed through different organisations:

‘I do worry that they [young people]…will get lost eventually and I think that’s a great shame and I don’t at the moment quite know what to do about it’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 1261-1263).

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Another HCP felt existing problems with IT systems were apparent:

‘a lot of children and young adults do get lost in the system in our area, in our region’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 75-76).

The organisational structure identified in Miriam’s case study appeared to hinder the

engagement of parents in ACPfYP. The IT systems used, and repetition of information

requested at appointments, led to Rachel (Parent) feeling irritated:

‘you’re in and out so many times, you don’t want the same questions asking, you don’t want this, you want them to be able to press a number and all the information’s there’ (Rachel, Parent, Miriam’s case study, lines 1529-1532).

This view was shared by the HCP in Miriam’s case study:

‘[The structure of the organisation is] not brilliant, mainly because there’s no set rules about…information sharing…That sort of thing’s a bit frustrating’ (Hannah, General Paediatrician, Miriam’s case study, lines 300-301 and 651).

Despite expressing frustrations with the IT in different organisations, one HCP felt existing

problems will not be solved merely by greater investment:

‘it’s the whole system that needs to be more joined up and more streamlined and more consistent with itself’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 647-649).

Problems associated with the organisational structure may be more apparent at key times in

the care of young people. During interviews for this study, parents/carers and HCPs

identified planning for transition as a challenge during ACPfYP. James (Parent,) felt

Bartholomew’s ACP meant approaching the transition period was a particularly troubling

issue because of the uncertainty surrounding both his current and future care provision:

‘As a parent, it’s a little bit scary because we don’t know what’s happening ’ (James, Parent, Bartholomew’s case study, lines 36 and 40).

This concern was shared by two HCPs in Bartholomew’s case study. Firstly, the service

provision for adults did not match the service provision for young people:

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‘there isn’t the services for adults’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 1279-1280).

Secondly, there were concerns about the ability of the professional team to smoothly

transition young people:

‘we don’t have that very swift transitional process across the team’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study lines 998-999).

These views were corroborated by Lydia (Parent) who indicated a widespread apprehension

for other families:

‘it’s a bit nerve wracking and I think it is for a lot of parents that…we know of [with] children of around Peter’s age’ (Lydia, Parent, Peter’s case study, lines 1127-1128).

Lydia (Parent) further expressed her fears about Peter’s imminent transition from paediatric

to adult services. More than just feeling anxious about what might happen during the

transition period, Lydia was worried that she would not have a large input into his future

care:

‘the thought that someone could say no you can’t stay, we’ll look after him, no, no, no, I don’t want to think about that scenario’ (Lydia, Parent, Peter’s case study, lines 302-303).

More positively, there was some recognition that strategies can be put into place around

the timing of ACPfYP to ease the transition process and allow information to be shared:

‘the longer the transition the better’ (Lydia, Parent, Peter’s care study, lines 1140-1141).

This view was developed by considering the age of young people when ACPfYP begins, and

its impact on transition process. Starting ACPfYP earlier allowed for better planning of the

transition period, and so positively impacted on the engagement of young people in their

own ACP. One HCP described the early initiation of ACPfYP as the gold standard of care:

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‘So we start seeing them when they’re younger, we transition them fully rather than waiting, that’s it, it’s your eighteenth birthday…off you go’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 1034-1036).

When considering the experiences of ACPfYP as impacting on the planning for transition of

young people from paediatric to adult care, some participants highlighted individual

anxieties. Conversely, there were signs that some HCPs were aware of these concerns and

were starting to put strategies in place to ensure the process was as seamless as possible.

Matthew (Consultant Paediatric Neurologist) expressed concern at the lack of integration

between his team and other services, and the shortage of HCPs skilled in palliative care.

Matthew also expressed apprehension at the ability of organisations to cope with the

transition of young people from paediatric to adult services:

‘we have this in the paediatric service but the adult service this is still something that needs to be established’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 1202-1204).

Another HCP disagreed about the care provision for paediatric patients:

‘we don’t have a service for children that go to Lightfog [Hospital]’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, line 35).

Although early transition did not happen in Bartholomew’s case, there are signs that

services were beginning to improve:

‘I guess there is…an issue, but I think we’re slowly tackling it’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 1284).

Yet within Bartholomew’s case study, the pressures to produce a smooth ACPfYP process

still existed for some HCPs:

‘they [young people] move over to adult services and…we seem to be someone like the big bad wolf like we’re all of a sudden, we’re talking about death’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 526-528).

Therefore, the transition period appeared to be a specific time of anxiety, which was

exacerbated by existing IT systems. Young people risked being lost in the healthcare system

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during their transition period, and the transition period itself seemed to be a barrier to their

engagement in ACPfYP. One HCP felt the ACPfYP process had become complicated because

the structure of organisations did not allow for 24-hour care to be provided:

‘there’s lots of challenges…in terms of infrastructure, co-dependency and other specialist services’ Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 154-156).

A HCP in Peter’s case study also identified a lack of 24-hour community nursing provision.

She explained this situation led to HCPs differentiating between the options available to

young people and their family as part of ACPfYP:

‘there’s theoretical choices and then there’s the realistic choices…based on what is genuinely available’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 328-329).

A lack of care options resulted in having to distinguish between the services HCPs would like

to offer and those which can be provided:

‘we’ve had, sometimes, nurses kind of falling over each other, but very often that’s all nine-to-five services, and…any sort of out of hours cover was non-existent’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 786-789).

Limited care provision can impact on the timing of ACPfYP and engagement of people in the

process because services needed to provide future care are not always available. One HCP

suggested a different organisational and cultural attitude to ACPfYP might help resolve these

problems. Peter’s ACP was more successful at engaging relevant people because provision

of care was moved from the larger, and more central, Lightfog Hospital to a local level:

‘because it’s done…at a local level, it’s easier to do…and work with the family to complete an advance care plan’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 494-495 and 508-509).

Participants who spoke about the provision of 24-hour care were clear that organisational

culture created a barrier to using ACPfYP because it was not always aligned to meeting care

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needs. Organisational structure may also benefit from local provision to help engage

services, engage young people and their parents, and provide individual care.

6.4.6.2 Impact of advance care planning for young people (ACPfYP) on workloads and resources

There was agreement across the four case studies that ACPfYP had a significant impact on

the workload of HCPs. The extent of this impact is either worsened or lessened by the

organisation’s attitude to ACP. John (Consultant Paediatric Neurologist) explained his

organisation encouraged new ways of working and were responsive to new working

practices:

‘…they’re very receptive to innovation…[and] certainly in my experience they listen to arguments’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1272-1273 and 1274).

Nevertheless, there was recognition of the potential impact of this positive attitude on the

workload of HCPs involved in ACPfYP:

‘there comes an enormous responsibility and commitment and I think people need to be very clear, this is not a nine to five job’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1025-1027).

In Peter’s case study, both Mary (Hospice Clinical Manager) and Ruth (Consultant

Paediatrician) agreed that ACPfYP is,

‘a time-consuming process’ (Mary, Hospice Clinical Manager, Peter’s case study, line 410).

Having time available to engage in ACPfYP can put further pressure on HCPs. John

(Consultant Paediatric Neurologist) summarised one young person’s ACP he had been

involved in which took an estimated 850 hours in total, and he said he simply allowed

whatever time is necessary for discussions. Therefore, the length, number, and nature of

discussions during ACPfYP cannot be pre-defined. A lack of clarity around the ACPfYP

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process, in terms of resources required to see it through to completion, resulted in John

working long days or having a long working week:

‘I end up being here late or [I] come in over the weekend’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1218-1219).

John (Consultant Paediatric Neurologist) also recognised the imprecise nature of discussions

during ACPfYP put pressure on resources and finances. Yet he believed this was offset by the

outward thinking culture within the organisation, and the potential benefits offered by

ACPfYP:

‘[There is] not a doubt in my mind that advance care planning at this level is highly cost effective’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1226-1227).

This view was contrasted in Bartholomew’s case study, where the consequences of financial

pressures were blamed for gaps in Bartholomew’s current care:

‘GP’s appointments, they’re not always there…the specialists, they are okay but they are also…overcrowded, they can’t see you straight away…what he [Bartholomew] should get for medical treatment, always delayed, always cancelled appointment [sic]’ (James, Parent, Bartholomew’s case study, lines 633-635 and 642-643).

James (Parent) added that differences in services have been more evident since austerity

measures were implemented, and he attributed these problems to cost-saving measures:

‘[Services are not good because of] the NHS cuts…[the] NHS mostly try to save money’ (James, Parent, Bartholomew’s case study, lines 627-628).

In contrast, Rachel (Parent) recognised the financial constraints of the NHS but blamed

people who misuse the health services:

‘everyone says National Health Service is shit, but sorry I don’t agree…stop going when you’ve got a sore throat…[some parents also I know] come back and sue the hospital because they’d [their children] lived an extra few years’ (Rachel, Parent, Miriam’s case study, lines 128-1309 and 1621).

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Consequently, ACPfYP had to fit in the increasing workloads of HCPs and organisations.

Despite suggested cost savings as result of using ACPfYP, the burden still appeared to rest

on HCPs to fit discussions, and the documentation of them, into an already busy work

schedule. There was a perception from some parents that services were poor and austerity

measures were to blame, leading to potential problems around the timing of ACPfYP and

the engagement of parents.


This theme identified the influence of organisational structure and culture on the

experiences of ACPfYP. Disjointed IT systems within and across healthcare organisations

have created a barrier to initiating and using ACPfYP because information about care plans is

not easily shared. Problems around the transition of young people to adult care, and the

lack of local, 24-hour care, have also led to a poor experience of ACPfYP for some

participants. These experiences may result in a barrier to the timing, and implementation of,

ACPfYP, and the engagement of young people and their parents in the process. There was

also evidence of financial pressures facing HCPs, but this problem did not affect every HCP

or organisation. Additional workload pressures for HCPs were not always eased by

organisational structures, and the result was that HCPs needed to squash ACPfYP into

commitments or work additional hours to accommodate the needs of young people and

their family. The influence of a positive and innovative organisational culture suggested

ACPfYP can effectively engage people.

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If ACPfYP is to incorporate the wishes of young people and engage them in their own care

planning, it is important to understand the views of involving the young people in ACPfYP.

The next, and final, theme will explore how young people can be engaged in the own ACP.

6.4.7 THEME 7: INVOLVING YOUNG PEOPLE IN THEIR OWN ADVANCE CARE PLAN (ACP)

This theme presents data related specifically to the engagement of young people in their

own ACP. There are various sub-themes to aid understanding. The first sub-theme sets out

views concerning the optimal age to initiate ACPfYP. Facilitators and barriers are outlined in

separate sub-themes. Finally, suggestions of who should be involved in the ACPfYP process

are presented. Therefore, this theme covers all three study objectives.

6.4.7.1 Optimal age to initiate advance care planning for young people (ACPfYP)

In the case studies of Andrew, Bartholomew and Peter, all young people and parents, where

they were interviewed, agreed ACPfYP discussions would be best started when young

people are in their early or mid-teenage years but prior to transition:

‘[ACPfYP discussions should begin] when you’re going from a child to an adult’ (Andrew, Young Person, line 317).

James (Parent) agreed with this approximate age of young people:

‘…[aged] seventeen, eighteen…he [Bartholomew] should [be] involved…[because] he’s more mature’ (James, Parent, Bartholomew’s case study, lines 428-429 and 443).

Susannah (Carer) added that young people should be engaged when they reach this age

because they are more likely to understand and agree to the ACP process:

‘[Young people are] an age then to consent’ (Susannah, Carer, Andrew’s case study, lines 134-135).

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Other participants across the case studies believed that early-teens, or younger, is too

young to be involved in ACPfYP discussions. Eve (Consultant Respiratory Physiotherapist)

stated that young people in their teenage years do not have the capacity to understand

discussions around ACPfYP:

‘before the ages of fourteen, fifteen, sixteen…they just don’t have that understanding of the future’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 303-304).

This experience was agreed by another HCP in a different case study:

‘probably most twelve to fourteen year olds…or even older, wouldn’t want to sit down and have a heavyweight discussion’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study lines 1165-1166).

However, Elizabeth (Grandparent) believed she would want to attend the first appointment

without Andrew (Young Person), and then decide whether he should attend future

appointments. In this instance, she felt Andrew’s ability to emotionally and cognitively cope

with the process of ACPfYP was more important than his age when deciding whether he

should participate in the process:

‘I wouldn’t involve him [Andrew]. I’d like to find out what it’s all about first’ (Elizabeth, Grandparent, Andrew's case study, line 546).

Rachel (Parent) also felt it would be wrong to involve children in their own ACP. The

discussion of ACP in front of young people with limited cognitive understanding or limited

means of communicating their wishes for future care was considered unethical:

‘it’s heartless…I’m not talking about that in front of her…you don’t tell the dog you’re taking them to the vets, do you?’ (Rachel, Parent, Miriam’s case study, lines 1436 and 1454-1456).

These views did not equate with those of HCPs, who recognised age alone should not

dictate the engagement of young people in their own care planning discussions. Across the

case studies of Bartholomew and Peter, there was some agreement that it was

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inappropriate to pinpoint a specific age when to include young people. Instead, the

opportunity to involve young people in discussions should be open to them if they express

an interest to be involved:

‘I would always say, if they’ve shown an interest, at whatever age, then they should at least have an opportunity to be involved’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 639-641).

The ability to be involved in ACPfYP discussions, and the maturity of the young person, were

felt to be important when contemplating the engagement of young people:

‘if he [Peter] could verbalise and we felt like he had an understanding…I think Peter [Young Person] would ask the questions’ (Lydia, Parent, Peter’s case study, lines 939-941).

Furthermore, the condition, and the potential deterioration of the health of the young

person, is an additional factor which should be considered when thinking about including

them in their ACP discussions. One participant spoke of the importance of engaging young

people and recording their wishes about future care ‘before the illness gets too far’

(Susannah, Carer, Andrew’s case study, line 473).

These factors might explain why one HCP agreed professionals needed to be more eager in

the engagement of young people in ACP discussions:

‘we need to be more proactive around teenagers’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 581).

Therefore, it is important to consider young people’s age, and the related issues of their

maturity and the stage of their condition, to facilitate their engagement in ACPfYP. It was

suggested young people should be old enough, and mature enough, to understand the

nature of the discussions. In addition, young people should be engaged, and ACPfYP should

be initiated, before their condition deteriorates beyond the point they can be actively

included in the process. The following two sub-themes will outline what young people, their

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parents/carers, and HCPs considered the main factors which further enabled and hindered

young people’s engagement in ACPfYP.

6.4.7.2 Facilitators to engagement

The majority (n=12) of participants in the study contributed to this theme. Those who did

not identify any facilitators to the engagement of young people in their own ACP (n=3)

were: Bartholomew (Young Person), who was not able to articulate his views; Elizabeth

(Grandparent) and Rachel (Parent) felt young people should not necessarily be involved in

the discussions. Various facilitators were identified by young people, their parents/carers,

and HCPs to help engage young people in their own ACP.

Andrew (Young Person) identified the availability of support and written information from

both HCPs and family as key features which helped him engage in his ACP discussions:

‘[I had a lot of support from] my Nan and…a support worker…a bit more [written] information before they actually start with it [would be useful]’ (Andrew, Young Person, lines 198, 203 and 351).

Equally, the availability of HCPs to support young people and their family during ACPfYP was

also present in Bartholomew’s case study:

‘when you see…any support, any sign from support, we feel better, we feel a little bit fuelled’ (James, Parent, Bartholomew’s case study, lines 503-504).

The attitude and interest of young people to engage was important for several participants

across case studies. Susannah (Carer) mentioned the attitude of young people: if they want

to take part in discussions, this should be welcomed; if they do not show any interest, their

participation should not be forced. John (Consultant Paediatric Neurologist) and Mary

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(Hospice Clinical Manager) felt that the involvement of young people in their ACP amounted

to:

‘if they don’t want to, that’s fine, but they should at least…be given the opportunity’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 80-81).

Related to this judgement, most participants (n=7; parents n=1, HCPs n=6) mentioned the

importance of considering the cognitive ability and maturity of young people impacting on

their engagement:

‘[Participation depends on] whether they can understand what an advance care plan is’ (Susannah, Carer, Andrew’s case study, line 414).

This view was shared by HCPs in other case studies:

‘[Participation] depends very much on their cognition, their insight and their maturity’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 217-218).

There was also evidence that young people’s ability to understand ACP discussions and

make informed decisions about their future care had been underestimated:

‘they [young people] actually know quite a lot about it already…they may know more than we realise’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 279 and 285-286).

Engagement of young people was further facilitated by communicating in a way which was

accessible and contextualised ACPfYP to help them understand the process. As discussed in

Theme 3 above (page 184), communication needs to be open, honest, sensitive and

empathetic. Accordingly, HCPs were mindful to outline,

‘the framework…and the context in which you discuss things and how you explain what an advance care plan looks like, and what it is there for, and what the purpose of it is’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 237-240).

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Two HCPs across the case studies of Bartholomew and Peter agreed communication

methods should be considered to facilitate the engagement of young people who are non-

verbal or communicative difficulties, or find it difficult to discuss sensitive issues:

‘a lot of these children can’t [communicate]…they’re completely quadriplegic but they can still talk, they can still use…their iphones, ipads’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 971-973).

Effective communication provided a relaxed inroad to more formal conversations and

eventual documentation of wishes for future care. Informal discussions helped engage

young people and ‘just to get into the swing of things’ (Andrew, Young Person, line 391).

Similarly, thought should be given about the environment for those initial discussions to

ensure young people are relaxed and not overwhelmed by a clinical setting. One young

person suggested initial discussions should take place at home so young people are in a

familiar and comfortable environment:

‘there’s everyone around…you might want to keep it [the discussion] personal’ (Bartholomew’ Young Person, lines 430-431).

HCPs and parents/carers also need to take a steady approach to ACPfYP to include the

young person at their own pace and work through the issues which need to be discussed

and agreed. For instance, this includes,

‘working with the young person on a more gradual basis’ (Ruth, Paediatric Consultant, Peter’s case study, lines 971-972).

Furthermore, the identification of a trigger to begin discussions facilitated the process of

involving young people in ACPfYP:

‘using a combination of…behavioural verbal cues and then exploring it’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 1157-1159).

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These triggers were best identified by someone who not only had the experience and skills

to recognise them, but also knew the family well. Therefore, the development of

relationships prior to initiating ACPfYP was important to foster a trusting relationship in

which these triggers can be identified.

Successful engagement of young people in their ACP was also facilitated by utilising

accessible documentation to record discussions:

‘we need…these sort of documents freely…available in the paediatric services when these patients are diagnosed’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 513-515).

Documentation needs to be fit for purpose to allow information to be easily recorded and

shared:

‘you need to have something that’s standardised but you have to have something that’s fairly easy to navigate because chances are whoever picks it up is not going to have seen one before and not seen one recently’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 556-558).

A number of facilitators were identified to help engage young people in their own ACP. For

example, providing support and written information to answer questions, helping

contextualise ACPfYP, and informing young people of the process all enabled engagement.

Timing of discussions was also important to recognise if, or when, young people want to

participate. Furthermore, recognising the cognitive ability and maturity of young people

helped facilitate engagement. Communication needs to be clear and personalised to young

people, and this can be aided by the environment where discussions take place and the

identification of triggers to facilitate conversation. Utilising documentation which is

straightforward to complete and share also meant ACPfYP was simplified and more likely to

engage all participants.

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6.4.7.3 Barriers to engagement

The facilitators to engagement were set out above. This sub-theme sets out the barriers to

the engagement of young people in their own ACP, which were identified by young people,

their parents/carers and HCPs (see Appendix 36). These barriers are in addition to any

contrasting views of the facilitators set out above.

Age, maturity, and cognitive ability were all identified as potential barriers to engaging

young people in their own care planning decisions.

‘when you’re a bit younger it’s a bit harder to understand ’ (Andrew, Young Person, line 291).

Andrew qualified his comment by stating that he thought ten years old and under was too

young to fully understand the process of ACPfYP. This view was in agreement with that of

two HCPs in Bartholomew’s case study (Matthew, Consultant Paediatric Neurologist; and

Joanna, Ventilation Specialist Nurse).

The extent to which young people could participate in their ACP was complicated because

cognitive difficulties can hinder their ability to be engaged in a meaningful and informed

way:

‘[A] number of them [young people] have quite significant learning difficulties’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 261-262).

Therefore, communication was identified as a multi-layered barrier to engaging or

obstructing young people in ACPfYP. Barriers to the engagement of young people was their

capacity to understand information, make decisions about their future care, and

communicate those decisions.

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Furthermore, HCPs did not always give young people the credit they deserved for the level

of understanding they have:

‘nobody discussed it again no…you don’t really want to keep discussing about Andy dying’ (Elizabeth, Grandparent, Andrew’s case study, lines 608-609).

Elizabeth (Grandparent) and James (Parent), felt the sensitivity of talking about EoL issues

could potentially impact negatively on both young people and their family:

‘occasionally the parents don’t want to talk about it…[or] parents feel uncomfortable to talk to them [young people] themselves’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, lines 264 and 305).

Similarly, two HCPs suggested that fear or discomfort of talking about ACPfYP was a barrier

to engagement:

‘what they [young people are] scared about is not being able to communicate’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 966-967).

Alternatively, the failure or reluctance to engage young people in their own ACP may be due

to the fear of HCPs:

‘people are scared, you know at professional levels…they are scared about their own baggage they carry around’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1360-1362).

A lack of clarity around the process of ACPfYP can also cause problems when inexperienced

HCPs initiated and implemented ACPfYP. For example, Hannah (General Paediatrician) felt

guidance about the legal position of HCPs during the process and further support to

complete all relevant sections would have been useful:

‘[Something I would like included on ACP documentation is the] pitfalls really…and so distribution, legalities of what you really, really have to make sure they, parents, understand’ (Hannah, General Paediatrician, Miriam’s case study, lines 417-419).

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Any gatekeeping issues (see discussion in Theme 5, page 233) may be influenced by

concerns of parents/carers for the health of their child:

‘They might break up if they can’t think about their condition…Mentally, there’s a good chance he might depress himself’ (James, Parent, Bartholomew’s case study, lines 490 and 494).

The barriers to engaging of young people may be further aggravated by time constraints

placed on the discussions and documentation of ACPfYP:

‘if you’re [a] nine to fiver [sic] then I don’t think advance care planning is the right thing’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1401-1402).

Practical issues also created a barrier to engaging young people in the decision-making

process. Without access to transport, or with parents under the pressure of caring duties for

other family members, young people did not always have the opportunities to attend

appointments to engage in discussions about ACP:

‘parents maybe cannot afford to take them all that way for visits, or can’t drive, or have other children, low income families, social deprivation, their children might really struggle to get to…these specialist centres’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 173-176).

Alternatively, young people may simply have a preference not to participate in ACPfYP:

‘it’s not for everyone…some people just say I don’t want to look beyond today’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 931 and 982-983).


In summary, there is a general consensus that cognitive ability, and aptitude to

communicate clearly, were the main barriers to engaging young people in their own ACP.

There are also various other potential barriers which have contributed to young people not

being involved in their own care planning process, including: gatekeeping by parents or

HCPs; practical issues, or family pressures, which can prevent young people from attending

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appointments; the attitudes of parents/carers and HCPs; and the individual preferences of

young people.

6.5 CHAPTER SUMMARY

This chapter has outlined the key findings from four case studies, and the young people,

parents/carers, and HCPs that comprise them. Data has been presented in seven key

themes: understanding of ACP; ACPfYP in practice; communication; education and training

of HCPs; relationships; organisational structure and culture; and involving young people in

their own ACP.

There was general agreement about what ACPfYP aimed to do, which should primarily be to

improve the long-term care of young people and reduce anxieties and uncertainties about

their future care. However, there was sometimes difficulty in expressing these views clearly.

Misunderstanding of the aims of ACPfYP can occasionally result in poor experiences of

ACPfYP, such as young people not being engaged in the process.

Experiences of ACPfYP in practice were mixed. Similarities across the case studies included

the timing of ACPfYP, and the view that ACPfYP was expected to provide plans for long-term

care rather than short-term differences in care provision. The majority of participants

experienced different formats of documentation. Some paperwork used a standardised

format, which helped engage young people and share their wishes. Other documentation

was adapted from different medical conditions, and one was devised by a consultant.

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Effective communication, characterised by openness, honesty, sensitivity, and empathy,

facilitated the engagement of young people in their ACP. Conversely, poor communication,

which was impersonal or not individualised, created a barrier to their engagement.

Opportunities to develop effective lines of communication were aided when HCPs identified

triggers to find a way to discuss sensitive topics and keep the discussions going.

Furthermore, the engagement of young people was facilitated by a good understand of ACP.

Training for HCPs was sometimes inaccessible and expensive for non-consultants, which

impacted on their ability to lead ACP discussions. Instead, more experienced HCPs

recognised the need to be more proactive in finding and accessing support and training.

Good relationships between the young person and their parents/carers, and between all

participant groups in ACPfYP, facilitated young people’s engagement in their care planning.

However, there were sometimes tensions in these two sets of relationships. Therefore, poor

relationships impacted on people’s experiences of ACPfYP, and the engagement of young

people in the process. Conversely, relationships were stronger when they had been built

prior to initiating ACPfYP. When prior relationships had developed, the engagement of

young people in their ACP was more likely to be facilitated.

An organisation which is open to innovation and pioneering working practices fostered a

working culture in which HCPs could work flexibly to initiate ACPfYP and engage young

people in the process. However, problems with IT systems and funding of the health sector

contributed to the creation of barriers to engaging young people in their ACP. These factors

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contributed to existing complications around the transition of young people from paediatric

to adult services, the sharing of information, and the joining up of services to provide care.

As a result of the above findings, there were some clear facilitators and barriers to engaging

young people in their own ACP. Facilitators included the development of prior relationships

between HCPs and the family, which then allowed effective communication and the

identification of triggers to aid discussions. Conversely, there was sometimes discomfort and

apprehension from all participants when discussing ACPfYP. Uneasiness was exacerbated by

the heavy workloads of some HCPs. There were also multi-faceted factors which acted as

either a facilitator or a barrier to the engagement of young people in their ACP: the

availability of support and written information; the age, cognitive ability, and maturity of

young people; and the effectiveness of communication.

Consultants were considered a vital component in ACPfYP. For most participants,

consultants were important to lead both the process and the engagement of young people.

Other professionals, such as other HCPs involved in the care of young people, were also felt

to be important to the ACP process. Likewise, it was agreed that parents should be included

in ACPfYP. Parental involvement was particularly important if young people’s

communication abilities prohibited their full engagement.

To further understand the data collected in the study, the following chapter, Chapter 7, will

present the CDA findings relating to power in relationships.

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CHAPTER 7 – FINDINGS: CRITICAL DISCOURSE ANALYSIS 7.1 CHAPTER INTRODUCTION

The previous chapter presented a thematic analysis of the data derived from 15 interviews

across 4 case studies. During the coding and thematic analysis of this data, a power element

in relationships was evident by the way some participants discussed ACPfYP in their

interviews. Therefore, this dynamic in the data has been explored using an additional,

relevant approach: critical discourse analysis (CDA). This chapter presents the findings

around power, and it is organised primarily around communication to help understand the

data through a power narrative. Initially, the rationale for adopting CDA is stated as a

reminder of the justification outlined in Chapter 5 (Method chapter, page 122). To help

understand how power informs ACPfYP, data is focused on communication and the use of

language and is presented under two themes: Medical discourse and power within advance

care planning for young people (ACPfYP); and Use of self-monitoring communication and

power within advance care planning for young people (ACPfYP). The two themes will help

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explore participants’ understanding of ACPfYP. The chapter concludes with a summary of

the main findings from this part of the data analysis.

Critical discourse analysis has been performed on the transcripts of interviews with different

participants. The analysis presented in this chapter represents the CDA from interviews with

the participants and their reports of communication with each other rather than

observations and CDA of the communication directly between them. When people are

asked to recall experiences, there is a possibility their narrative can be erroneous because

of selective remembering, misremembering, conflabulation, or relearning, when a memory

depends at least in part on external prompts (Josselson, 2009; Michaelian, 2016).

Nevertheless, interviews are an opportunity for participants to construct, interpret, and

make sense of their experiences (Gemignani, 2014). Care has been taken to represent these

views and experiences and reports of direct communication between participants where it

was shared. These findings help to answer the first objective of the study, and in doing so,

also contribute to the second and third objectives.

7.2 RATIONALE FOR ADOPTING CRITICAL DISCOURSE ANALYSIS (CDA)

According to Van Dijk (2006), CDA is principally concerned with attempting to understand

contemporary issues and social interactions. Recognising an inequality in relationships can

be expressed in a power discourse through various forms of communication (van Dijk, 1993;

Redwood, 1999; Nikolić, 2012). Therefore, CDA is useful to produce informed and reliable

judgements about the interpretation of different motives when communicating (Bhatia,

2006). These factors are important to understand how ACPfYP works in practice because

CDA helps researchers understand processes (Mogashoa, 2014). CDA also helps recognise

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the complexity of interactions through a detailed analytical process, and its rigorous

approach has previously been used in healthcare research.

A power struggle can be explained by competing discourses within ACPfYP (Fairclough,

1995). Discourses are defined as the sociocultural and political context in which

communication occurs, and are specifically concerned with use of language and the

reproduction of ideological belief systems as contributing to patterns of communication and

social practice (Lupton, 1992; Fairclough, 2011; Yazdannik, 2017). Different discourses can

be present within conversations, and hence within the interviews for this study. The

discourse of power was the main discourse apparent during data analysis and this was

maintained by a medical discourse.

In line with the process of critical discourse outlined in Chapter 5 (Method Chapter), CDA

was used to identify the discourse type of the participants, and to what extent their

language did or did not conform to it. The analysis was developed by exploring, where

necessary, initially at sentence level and then at word and phrase level, using examples from

interview transcripts. In the quotes in this chapter, the length of the pauses is represented

by the number in rounded brackets, where 0.1 stands for a tenth of second. Phonetically-

transcribed words are shown in square brackets, and emphasis in speech is represented by

underlined words. The full transcription convention is in Appendix 16

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7.3 COMMUNICATION AND THE USE OF LANGUAGE

To understand the data, findings will be presented in the following themes: medical

discourse and power within ACPfYP; and the use of self-monitoring communication within

ACPfYP.

7.3.1 THEME 1: PERCEIVED USE OF A MEDICAL DISCOURSE AND POWER ON KNOWLEDGE AND

UNDERSTANDING IN ADVANCE CARE PLANNING FOR YOUNG PEOPLE (ACPFYP) DISCUSSIONS AND

DOCUMENTATION

The first theme explores the use of a medical discourse in communication within ACPfYP

which was reported by participants during their interviews. Data will be presented to

understand the perceived use of a medical discourse in ACPfYP discussions and

documentation, and the impact of these perceptions on knowledge, understanding, and

power in ACPfYP discussions and documentation. To aid understanding, and illustrate the

power narrative in relationships, data will be presented by case study.

In Andrew’s case study, John (Consultant Paediatric Neurologist) recognised the importance,

and the challenge, of using appropriate communication with young people and their

parents/carers:

‘[ACPfYP needs] a kind of reflection on language’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1382-1383).

Andrew (Young Person) felt that communication with John (Consultant Paediatric

Neurologist) had been satisfactory. When asked to elaborate, Andrew said ‘I’m not sure

about that’ (Andrew, Young Person, line 259). This reply may have represented a reluctance

to discuss the clarity, and content of, communication with professional members of the

team involved in his care planning. However, Susannah (Carer) explained that Andrew had

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the ability to comprehend information within a structured discussion process but could not

always express himself easily:

‘it’s just getting the words out [Andrew has difficulty with]’ (Susannah, Carer, Andrew’s case study, line 334).

Therefore, Andrew’s response to explain his answer may have been due cognitive difficulties

rather than an unwillingness to engage in the interview. Andrew’s case study suggests the

cognivitive decline of young people is something to be mindful of when sharing information

within the ongoing discussions of ACPfYP but Andrew did not indicate that communication

significantly impacted his level of understanding of the ACPfYP process.

Elizabeth (Grandparent), and Susannah (Carer), did not indicate that Andrew’s ACP

discussions and documentation were dominated by a medical discourse, but different

interpretations of the definition and aims of ACPfYP can help identify the clarity of

community within the discussion and documentation of the process. When interpreting the

data, a majority of participants (n=13) confirmed they had an understanding of ACPfYP and

what it was intended to do (see Chapter 6, page 148). However, there was a difference

between the articulation of ideas, which translated into slightly different definitions of

ACPfYP.

Clarity of communication can sometimes be lost when using terms that others do not

understand. When Elizabeth (Grandparent) spoke about ACPfYP, she confused it with a

carer’s assessment and the relieving of pressure on her as Andrew’s carer:

‘I suppose I was doing everything…and I wasn’t getting any younger…we [Elizabeth and her husband] really needed care, which you don’t think you do ’ (Elizabeth, Grandparent, Andrew’s case study, lines 212-213 and 217-218).

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Elizabeth (Grandparent) reported that knowledge about ACPfYP was not always clearly

communicated from HCPs to Andrew (Young Person) and his parents/carers. When

Elizabeth (Grandparent) was asked if she was given enough information about Andrew’s

ACP, she replied:

‘No. There was no [information]’ (Elizabeth, Grandparent, Andrew’s case study, line 602).

Elizabeth (Grandparent) believed that the gap in her understanding about ACPfYP was

created because of a lack of information about the process:

‘No-one’s ever talked to me about Andrew’s [ACP]…I don’t know what it [ACP] entails’ (Elizabeth, Grandparent, Andrew’s case study, lines 454 and 427).

Elizabeth (Grandparent) reported that one reason for this lack of information was because

of her perceptions of the attitudes of some HCPs:

‘We’ve only ever had one that did anything for us in, that was a long long time ago. The others talk a lot but don’t seem to do anything, that’s all I can say about them’ (Elizabeth, Grandparent, Andrew’s case study, lines 334-336).

Elizabeth’s reasons for not wanting to talk to HCPs about Andrew’s ACP were unclear:

‘His (Andrew’s) doctors are nice, but I don’t think I could talk to them about it [Andrew’s ACP]’ (Elizabeth, Grandparent, Andrew’s case study, lines 497-498).

Elizabeth (Grandparent) named one HCP she would be willing to talk to but did not explain

why she felt more comfortable discussing Andrew’s care planning with that HCP rather than

other professionals. The reluctance to discuss Andrew’s ACP with other professsionals might

have been due to a perceived power imbalance between Elizabeth (Grandparent) and HCPs,

but is more likely to have been because a relationship between Elizabeth and the HCP she

identified had already been established:

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‘That’s how it [Andrew’s ACP] all started, I think we’ve had them [current HCPs] the last five years now’ (Elizabeth, Grandparent, Andrew’s case study, lines 94-95).

This established relationship allowed Elizabeth (Grandparent) to gain further knowledge and

understanding of ACPfYP by ‘talking between yourselves or at meetings and things like this’

(Elizabeth, Grandparent, Andrew’s case study, line 440).

Findings from Andrew’s case study suggest potential for a lack of clarity of information

during the discussion process to contribute to a lack of awareness and a misunderstanding

of ACPfYP. The cognitive ability of young people was also a possible contributing factor to

the awareness and understanding of ACPfYP, and the need for clarity of communication.

However, participants in the case study did not report that a medical discourse was present

in the ACPfYP discussions. Viewing the documentation of Andrew’s ACP also suggested that

a medical discourse did not direct the recording of the ACP discussions.

Most HCPs interviewed for Bartholomew’s case study did not emphasise treatment or

medicalisation as a significant factor of ACPfYP:

‘a care plan is only ever appropriate when you truly understand what that person’s wishes are’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 861-862).

Another HCP believed ACPfYP should be distanced from a medical discourse and embrace

more accessible language for everyone involved in the process:

‘[HCPs should] try and word it [ACPfYP] in a way which they [young people] understand’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, line 385).

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As with Andrew’s case study, one HCP recognised the importance of communicating in clear

language during the process of ACPfYP. Clairty of communication included a limited use of

specialist terminology for this HCP:

‘[Most of the challenges around engaging young people in their ACP] are around cognition and understanding [of young people]’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 609-610).

For Eve (Consultant Respiratory Physiotherapist), effective communication was based on

establishing a therapeutic relationship with the young person:

‘the use of advance care planning needs to be approached with care and sensitively once you’ve established a therapeutic relationship with that individual’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 854-856).

Developing this relationship was considered difficult because of the age of the young people

and the sensitivity of the discussions:

‘I think, from from my point of view, you’re having these discussions with relatively young people’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 580-581).

James (Parent) reported his understanding of ACPfYP in medical terms:

‘I believe that [an] advance care plan is…something to support Bartholomew…as in medical [sic]’ (James, Parent, Bartholomew’s case study, lines 155-157).

James also stated that most of Bartholomew’s ACP discussions revolved around a medical

approach:

‘[ACPfYP discussions are] mostly [about] future problems like any operation or any medication or something.’ (James, Parent, Bartholomew’s case study, lines 327-328).

The perceived medicalisation of ACPfYP risked leading to particular problems. James said he

was unfamiliar with the term ’advance care plan’. This situation risked reducing James’

(Parent) knowledge and understanding of ACPfYP, and engagement in the ACPfYP process.

James reported communication between HCPs of different grades, and between HCPs and

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families, as ‘broken links’ (James, Parent, Bartholomew’s case study, lines 685-686). James

(Parent) perceived a power imbalance between different participants during Bartholomew’s

ACP discussions, which resulted in only doctors attending Bartholomew’s ACP meetings and

information not being shared with James by HCPs:

‘We see specialists in [the] hospital so the first problem’s like [these] guys, they knows [sic] everything [but do not tell me]’ (James, Parent, Bartholomew’s case study, lines 271-273).

Consequently, James (Parent) felt that the ACPfYP process did not engage Bartholomew as

fully as it could have done. Consequently, James (Parent) believed there was uncertainty

around the future care of Bartholomew (Young Person):

‘we knows what’s happening [sic] and…we always chat about Bartholomew’s condition (0.5) how [he will deteriorate…and what he] will do and how [he] will perform or what…he need[s] in future but we don’t know, if something goes wrong, where to go, we don’t know what to do’ (James, Parent, Bartholomew’s case study, lines 235-238).

The anxiety was apparent in James’ tone when he described a situation where Bartholomew

might require emergency treatment outside his regular hospital appointments:

‘we don’t know what to do in an emergency where to go, where we get help from medicalwise [sic]’ (James, Parent, Bartholomew’s case study, lines 259-260).

Bartholomew (Young Person) and James (Parent) had neither the medical knowledge nor

the power to lead ACPfYP discussions. James (Parent) expressed his frustration and worry

because of the perceived lack of care for Bartholomew (Young Person) and what he

considered the failure of organisations to share information about provision of care. James

(Parent) communicated these feelings with a despondent tone in his voice, and animated

hand gestures. Repetition of his sentiments at different points in the interview suggested

sincerity:

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‘It’s really confusing, frustrating, and scary’ (James, Parent, Bartholomew’s case study, line 314).

Anxiety may have been exacerbated by ethnic origin and language barriers. Data on ethnic

origin was not gathered as part of this study but based on the real names and accents of

James (Parent) and Bartholomew (Young Person), it was assumed they were of Asian

heritage.

‘[udder] (0.5) [udder] children with [dis] (0.4) same [condison] (0.9) was >er< transferred to adult services (.) they don’t have nutting in place so (0.7) [i’s] a bit scary’ (James, Parent, Bartholomew’s case study, lines 40-42).

James (Parent) sometimes mispronounced words, as indicated in the square brackets in the

quote, or was difficult to understand fully; he also paused frequently when talking.

Hesitations and pauses could also be representative of a power imbalance in the

relationship which can be exaggerated by ethnicity, although on reflection the hesitations

possibly represented him trying to find the correct words to use in the conversation.

Therefore, some participants in Bartholomew’s case study reported communication was not

always clear between them during the discussion of Bartholomew’s ACP. HCPs recognised

the importance of communicating in a way young people and parents/carers could

understand. However, James (Parent) said he was concerned that he and Bartholomew

(Young Person) were sometimes excluded from engaging fully in the ACPfYP discussion

because the perceieved imbalance of power in the relationships during the explanation and

discussion of ACPfYP.

Lydia (Parent) defined ACP in medical terms:

‘[Advance care planning is] about options or medication that might be available’ (Lydia, Parent, Peter’s case study, lines 109-110).

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However, Lydia (Parent) identified what she considered to be the impact of a medical

discourse of language for Peter (Young Person):

‘I don’t think he [Peter] understands…the complexive [sic] language [used in decision-making as part of his ACP] (Lydia, Parent, Peter’s case study, lines 810-811).

The perceived use of a medical discourse in discussions and documentation for Peter’s ACP

resulted in Lydia (Parent) reporting that she and Peter (Young Person) felt insecure because

of the perception that discussions were sometimes beyond their understanding. The use of

clear communication was important to aid understanding in the process of ACPfYP. Lydia

reported that ambiguous communication often resulted from poor relationships with HCPs:

‘unfortunately, that [misunderstanding of communication] has happened a lot with Peter and it’s led to us not being listened to…[but it is less apparent now because] we’ve got long established relationships [with] a lot of his consultants’ (Lydia, Parent, Peter’s case study, lines 277-281).

The communication between Peter (Young Person) and Lydia (Parent), and HCPs, in Peter’s

ACPfYP process therefore appeared to impact on the knowledge, understanding, and power

dynamics within the ACPfYP process, and the engagement of young people:

‘I don’t think Peter is able to understand that [complexity of communication]’ (Lydia, Parent, Peter’s case study, line 801).

The relationship between Lydia (Parent) and HCPs appeared to have been strained

previously because of what Lydia reported to be hierarchies of communication and power:

she described the circumstances of Peter being in hospital and screaming in pain but the

HCPs appeared reluctant to listen to Lydia’s concerns.

‘I kept insisting on them doing further investigations and they wouldn’t do it…because they just said he’s failing, he’s failing’ (Lydia, Parent, Peter’s case study, lines 421-422, 427 and 431).

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Lydia’s opinion was that this situation arose because HCPs were focused on Peter’s existing

medical condition, and this emphasis left her feeling powerless. Yet the perceieved power

imbalance was different from the corresponding relationships reported by participants in

Bartholomew’s case study. Lydia (Parent) felt the communication between her and HCPs

appeared to be more open than that described by participants in Bartholomew’s case study.

Lydia (Parent) also said that support from HCPs was available during Peter’s ACP discussions

and documentation:

‘I felt like somebody was there to talk to me whenever I wanted to talk about it’ (Lydia, Parent, Peter’s case study, lines 559-560).

In contrast to James (Parent) in Bartholomew’s case study, Lydia (Parent) felt she had the

knowledge of ACPfYP, or at least the power to request the knowledge. She reported that

being in this situation gave her the initiative to approach HCPs to help navigate through the

process of ACPfYP.

‘I know who I could easily just speak to if I was unsure about anything or wanted to change something’ (Lydia, Parent, Peter’s case study, lines 711-712).

Mary (Hospice Clinical Manager) recognised that communication with Peter (Young Person)

was effective because it was based on understanding his behaviours and responses:

‘We know Peter well so we’re able to tell from his behaviours and his responses to things, what he’s thinking and feeling’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 245-247).

Participants across the case studies suggested that ACPfYP needed to be a holistic process

which did not focus on the medical aspect of care: it represented a greater use of non-

medical language, which, in turn, was considered to be more likely to engage young people

and their parents/carer in the process of discussing and documenting ACPfYP.

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There was a difference of opinon about the perception of a medical discourse and power

between Peter (Young Person) and Lydia (Parent), and HCPs, in Peter’s case study. Lydia

(Parent) felt the apparent use of a medical discourse and the imblanace of power in

relationships risked creating a barrier to engaging Peter (Young Person). Lydia (Parent) said

she was able to challenge what she viewed as the use of a medical discourse of language but

believed Peter’s limited cognitive abilities meant the use of a medical discourse risked

creating a barrier to his engagement in the process. Lydia (Parent) also felt a perceived

power imbalance during the early stages of discussions and documentation of ACPfYP

increased the burden of worry around the process, but her use of open and honest

communication helped to redress the power inequity.

Conversely, Rachel (Parent) shared three incidents in the discussion and documentation of

Miriam’s ACP when she attempted to regain the power she felt she had lost within the

relationship with HCPs previously involved in the process:

‘[A consultant] come over and she said, I’m Miriam’s consultant. I said, no you’re not. I said you lost that right…two year ago [sic] when you last saw her, so fuck off’ (Rachel, Parent, Miriam’s case study, lines 1253-1255).

Rachel (Parent) explained how she sometimes seized control of the relationship by her

actions when she perceived HCPs to have dominated communication:

‘then there was another argument about resuscitation, so I took me bag out. I thought, no-one can resus her now [sic]’ (Rachel, Parent, Miriam’s case study, lines 211-212).

Rachel (Parent) was also confident to approach HCPs when she felt the privacy of Miriam

(Young Person) was at risk:

‘I kicked off. How dare you leave my end-of-life [plan] on top of their notes. Someone were just reading it [sic]. Who’s someone? It’s not [for] anyone to read.

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It’s for top people to read and know what to do, not anyone that fucking works here, so I did lose it’ (Rachel, lines 1370-1374).

Rachel’s actions may have been a response to perceived inequality in relationships during

Miriam’s ACP discussions and documentation. Rachel recognised that her use of language,

and possible accompanying aggression, helped regain the power she felt she had lost during

the ACPfYP process. Alternative HCPs were subsequently involved in Miriam’s ACP as a

result of Rachel’s actions. Both Rachel (Parent) and Hannah (General Paediatrician), a

current HCP, felt the relationships in Miriam’s ACP was on an equal footing since these

events occurred.

Rachel believed her proactive approach to ACPfYP ensured she had both a knowledge and

understanding of the ACPfYP process and was engaged in the process on behalf of Miriam

(Young Person). Participants in Miriam’s ACP reported that Rachel’s actions also contributed

to the current positive relationships between everyone involved in Miriam’s ACP:

‘[Now] I’ve got a good relationship with them [Miriam’s present consultants] and all I have to do it ring them and they’ll they’ll deal with me straight away ’ (Rachel, Parent, Miriam’s case study, lines 1493-1495).

Rachel (Parent) and Hannah (General Paediatrician) felt that current relationships appeared

to be characterised by openness and honesty:

‘we have a very good understanding that I will always be honest with her…and as long as she’s honest with me sort of thing, so I think she does trust my opinion and what we do’ (Hannah, General Paediatrician, Miriam’s case study, lines 160-162).

As with the case studies of Bartholomew and Peter, Rachel (Parent) was concerned that

young patients might not be cognitively developed enough to understand complicated

communication, or their LLC might inhibit their understanding of medical terminology

during ACPfYP discussions:

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‘a fourteen-year-old won’t actually understanding what’s happening…they won’t have the capacity [to understand]’ (Rachel, Parent, Miriam’s case study, lines 1347-1349).

Rachel also suggested that medical terminology could create a barrier to her engagement as

Miriam’s advocate:

‘[Consultants used to talk to me] but I’m not medical [so did not understand]’ (Rachel, Parent, Miriam’s case study, lines 1266-1267).

Rachel was clear that communication in Miriam’s ACP had to be clear and direct:

‘They [consultants] tell me straight’ (Rachel, Parent, Miriam’s case study, line 1240).

Therefore, the perceived power imbalance which was reported by participants in some case

studies was also described by Rachel (Parent) in Miriam’s case study. This perspective gave

Rachel (Parent) an incentive to stand up for Miriam (Young Person), who was unable to

communicate for herself: when Rachel felt that discussions and documentation of Miriam’s

ACP were dominated by a medical discourse, or a power imbalance in favour of HCPs, her

passion for Miriam was indicated by the reactions she shared in her interview. Rachel

(Parent) explained how she worked to regain the dominant position in the relationship; she

felt this resulted in a more open and honest relationship with HCPs, which had its

foundation on a greater balance of power between her and the HCPs.


In summary, participants reported that a medical discourse was sometimes present in

discussions as part of the process of ACPfYP. There were further indications that this

perceived use of a medical discourse has occasionally created a barrier to engaging young

people and their parents/carers in ACPfYP. The barrier was purportedly more evident when

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young people had limited verbal and cognitive abilities. However, there was limited data to

suggest that a medical discourse in discussions during ACPfYP were also present in the

documentation of ACPfYP.

The following sub-theme will present the findings from interviews which can indicate the

use of self-monitoring communication and the influence of power dynamics within ACPfYP.

7.3.2 THEME 2: USE OF SELF-MONITORING COMMUNICATION AND POWER WITHIN ADVANCE CARE

PLANNING FOR YOUNG PEOPLE (ACPFYP)

Self-monitoring is concerned with the regulation and control of communication as a method

of self-preservation during interactions with other people (Briggs, 1980; Dabbs, 1980).

Examples of self-monitoring behaviour include verbal communication: the use of particular

words and phrases, hesitations, pauses, repetition, or the use of the plural first-person, the

second-person, or third-person pronoun during speech (Ickes et al. 1986; Postma 2000;

Snyder 1974; Tal-Or and Drukman 2010). Non-verbal self-monitoring behaviours include

voice quality and body language (Snyder, 1974). Self-monitoring communication can

indicate a person's status, attitude, and level of co-operation in social interactions, and may

suggest a discourse of power (Snyder, 1974).

This section will present data relating to use of self-monitoring communication within

interviews with participants. Self-monitoring behaviour can highlight the potential for power

in relationships by indicating when appearances, behaviour, and personality can be checked

for levels of inappropriateness, which can then be adjusted accordingly (Snyder, 1974).

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Alternatively, self-monitoring behaviour can suggest sincerity: certain elements of

communication can be consciously emphasised to accurately communicate true thoughts

and feelings (Snyder, 1974). Data will be presented by participant group rather than by case

because it helps to understand the findings more clearly.

7.3.2.1 Use of self-monitoring communication and power by young people in interviews

The interviews with Andrew and Bartholomew (Young People) comprised more hesitations

and pauses than other interviews in the study; for example:

‘(8.7) I think it’s (6.9) I (2.4) I don’t know’ (Bartholomew, Young Person, line 32).

When Bartholomew (Young Person) was asked about his understanding of ACP, he paused

for 18 seconds, as indicated by the times within the brackets where 0.1 indicates one-tenth

of a second, and then gave an answer which was barely audible. Bartholomew (Young

Person) found it especially difficult to express himself. James (Parent) said that

Bartholomew (Young Person) was very shy, which could explain the number of times (n=11)

he hesitated and then replied, ‘don’t know’ during his interview. Andrew and Bartholomew

(Young People) sometimes chuckled and found the maintenance of eye-contact difficult

when pausing and attempting to answer questions. Bartholomew (Young Person) would also

occasionally begin to fidget in his chair when thinking of his responses to questions. Both

young people spoke with a quiet voice, which became quieter when they were unsure of

answers. Bartholomew’s voice was especially difficult to hear on the audio recording.

Hesitations in speech can sometimes symbolise a lack of confidence or indicate part of a

process of self-monitoring (see Background Literature Review, Chapter 2, page 44). Self-

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monitoring by young people could be attributed to the relationship between me as the

interviewer and them as the participant. Similarly, hesitations may have represented the

view that Andrew and Bartholomew (Young People) had of themselves, their understanding

of the interview questions, or their knowledge, or wish, to discuss the topic. Likewise,

Bartholomew’s shyness, embarrassment and lack of communication could also have been

representative of his concession of power to me in the interview context. A further

complicating factor was the limited cognitive abilities of young people:

‘those that are less cognitively aware…don’t really take on board as much as those that are [cognitively aware]’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 610-611).

The diagnosed condition young people had, and the resulting cognitive difficulties they

experienced, resulted in limited communication abilities. As reported in their interviews,

young people sometimes found expressing themselves difficult and awkward. Interviews

with some participants across the case studies suggested that ambiguous language, or

communication focused on a medical discourse during ACPfYP, posed a particular challenge

for young people with limited cognitive abilities. On reflection, hesitations and pauses are

likely to have revealed the cognitive abilities of young people to express themselves and tell

their narrative. The young people sometimes appeared embarrassed as they searched for

words to articulate thoughts, which further supported the idea that their hesitations were

better explained by their cognitive abilities rather than self-monitoring.

Additionally, there did not appear to be any filtering of questions when interviewing Andrew

and Bartholomew (Young People). Both young people used simple, uncomplicated language,

and frequently gave answers which were in incomplete sentences. For example, when

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Bartholomew (Young Person) was asked who he would like to discuss his ACP with, he

replied,

‘Talk to a professional’ (Bartholomew, Young Person, line 301).

The lack of discourse markers in interviews with young people was particularly evident in

Bartholomew’s interview, which was characterised by one-word, or short, responses, such

as ’yeah’ or ‘don’t know’, or responses in the singular first-person pronoun, which may have

reflected the cognitive abilities of young people to express themselves and tell their

narrative. Conversations were free-flowing and contained simple language: short words

with few syllables, and abbreviated words or generalised terms. When Andrew (Young

Person) was asked why he would prefer a consultant to lead his ACP, he replied,

‘Cos you’ve got more confidence with them and stuff like that’ (Andrew, Young Person, line 327).

Therefore, what may be perceived as self-monitoring communication from young people in

interviews was more likely to have been explained by their limited cognitive and verbal

abilities.

7.3.2.2 Use of self-monitoring communication by parents and carers in interviews

Interviews with parents/carers included contrasting uses of first-, second-, and third person

pronouns. In Andrew’s case study, there were few hesitations during the interview of

Elizabeth (Grandparent), and most of her pauses could be attributed to thinking time:

‘Er, well yes I mean, the care people came and then, over, the carers came down, and spoke to them, and y’know then kind of, picked which one you thought was, alright for you, and, that’s as far as I can remember really’ (Elizabeth, Grandparent, Andrew’s case study, lines 192-195).

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However, Elizabeth generally used the singular first-person pronoun when outlining the

reasons for initiating ACPfYP, but spoke in the plural first-person pronoun during other parts

of the interview:

‘Because we [Elizabeth and her husband] was getting older [sic]’ (Elizabeth, Grandparent, Andrew’s case study, lines 133).

Elizabeth’s use of language appeared to put her and her husband at the centre of the

conversation, and at the centre of ACPfYP by shifting the focus of ACPfYP away from Andrew

(Young Person) and adopting the shared, “other”, perspective. This standpoint helped

Elizabeth communicate her narrative but also risked reducing the process of ACPfYP to an

assessment of her and her husband rather than a care planning process for Andrew.

Conversely, Susannah (Carer) and James (Parent) rarely used the third-person pronoun

when discussing ACPfYP. Both participants spoke in the first- or second-person pronoun

during most of their explanations of the discussion and documentation of ACPfYP. One

instance when Susannah (Carer) spoke in the third person was when she described the care

of Andrew (Young Person) by HCPs:

‘it’s just taken for granted that they’ll try their best, as far as I know ’ (Susannah, Carer, Andrew’s case study, lines 145-146).

Use of the third-person pronoun may have helped Susannah (Carer) distance herself from

providing medical care and treatment for Andrew (Young person). The idea of self-

monitoring may be supported by Susannah’s use of the singular first-person pronoun, at the

end of the quote, which could have suggested an attempt at self-protection. Alternatively,

Susannah’s use of language could have helped her emphasise her personal opinion and her

view of the role of HCPs in the care of Andrew (Young Person).

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In Peter’s case study, Lydia (Parent) also used the plural first-person point of view when she

shared her views of what constituted ACPfYP and talked about the care of Peter (Young

Person) from the viewpoint of both her and her husband. However, she spoke in the

singular first person when explaining her possible misinterpretation of ACP: ‘Maybe I’m

misunderstanding what the whole thing is’ (Lydia, Parent, Peter’s case study, line 852).

Lydia’s switch between the plural first-person and singular first-person pronouns may have

suggested self-monitoring language when discussing general issues around ACPfYP and the

care of Peter (Young Person), but an open and honest acceptance that she may have

misunderstood the process of ACPfYP. On reflection, Lydia’s use of language is more likely to

have represented the shared view of care between her and her husband when using the

plural first-person point of view and then the personal realisation that she might have

misperceieved ACP when talking in the singular first-person pronoun.

In Miriam’s case study, Rachel (Parent) frequently used discourse markers:

‘when they gave the leaflets, I thrown them back [sic]. I said you think I want to read about it, and he says, well, it’s information, [I] don’t want it’ (Rachel, Parent, Miriam’s case study, lines 725-727).

These discourse markers helped Rachel share her narrative. Her conversation was natural

and aided the recreation of events using language, which was accessible and easy to

understand. Her body language was relaxed and open, and she did not avoid eye contact

during her interview; her language was often in the present tense as she spoke with passion,

and emphasised words and phrases like ‘you’ and ‘I’m saying’ as though she was talking

directly to the consultant. This helped to put me in the middle of the story and was more

personal and engaging than other interviews.

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Therefore, communication by parents/carers in their interviews indicated different

intentions. Some hesitations may have signified thinking time during interviews, while

others are likely to have suggested individual opinions and personal awareness as the

interview developed. Parents/carers generally maintained eye contact, and there was no

clear and obvious changes in body language to signify that they felt uncomfortable or were

trying to hide the meaning of their communication.

7.3.2.3 Use of self-monitoring communication by healthcare professionals (HCPs) in interviews

The use of language in the interview with John (Consultant Paediatric Neurologist) indicated

his personal views of his levels of proficiency:

‘I’ve…been developing services (0.7) working in a multi-professional (0.5) fashion (0.7) em (0.5) do all the screening for (0.5) cardiac (0.6) respiratory spinal (0.6) em (1.3) lower limb (0.5) orthopaedics’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 899-902).

John continued with similar language to reinforce his expertise:

‘You know (0.2) I know (0.5) this (0.6) patient group inside out (0.6) and I think that’s what you need’ (lines 906-907).

John’s pauses were longer than some other pauses during his interview, which may have

suggested thinking time during the conversation, but could also have been used to

emphasise knowledge of the patient group. By saying ‘you know’ at the beginning of the

second quote and ‘that’s what you need’ at the end, John emphasised his professional

aptitude during the interview. Furthermore, emphasis of the word ‘all’ in the first quote

could have symbolised John wanted to accentuate the importance and scope of his work,

but may equally have represented an honest and accurate communication of his thoughts

after a short pause for thinking time.

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John (Consultant Paediatric Neurologist) may have used discourse markers such as ‘Yeah

and,’ ‘so’ and ‘I think’ to move the focus of the interview on to what he wanted to discuss.

However, utilising discourse markers in this way can also represent an opportunity to

demonstrate professional knowledge. For example, John said ‘yes and’ when he agreed with

the definition of ACPfYP and volunteered to add his own ideas to the definition which had

been gathered from years of experience. When talking about engaging young people and

their families in ACPfYP, John shifted the focus of the question to himself when he began his

response ‘In my experience’ (John, Consultant Paediatric Neurologist, Andrew’s case study,

line 118) and then ‘I think’ (John, Consultant Paediatric Neurologist, Andrew’s case study,

line 122). This use of language helped John share his own professional, expert point of view.

However, a potential consequence of using this discourse is that young people and their

families feel the professional, rather than the young person, is leading ACPfYP discussions.

Despite the expectation that HCPs would lead ACPfYP discussions, young people and their

families may not be engaged in ACPfYP as fully as they could otherwise have been if they

perceive HCPs’ use of language creates a power hierarchy in the discussion of the care

planning process.

When asked whether there were pressures to be more efficient with resources, John

(Consultant Paediatric Neurologist) replied that if the hospital wanted to employ someone

more efficient and quicker with ACPfYP discussions,

‘then they can be my guest and somebody else can take over my job, but they haven’t asked me that and I don’t think they will’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 1282-1283).

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This quote may represent John’s perceived position of power, professional expertise and

confidence in the organisation’s culture and his status within the organisation. John’s

expertise and many years of experience are likely to have afforded him to share his personal

opinions openly and honestly during the interview.

John (Consultant Paediatric Neurologist) did not use ‘perhaps’ in his interview, and his uses

of ‘maybe’ generally came later in the interview when our relationship was more relaxed.

The conversation was based around factual information, with few assumptions or

hypothesising.

‘we had another review of the advance care plan…a year and a half or so later and that was when he showed clinical evidence of deterioration with significant nocturn hypoventilation so the timing of revising things is…driven by events’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 674-678).

The exception to this was when John spoke about planning for possible deterioration in the

condition of young people and potential medical interventions. Here, there was greater

hesitation and more disjointed speech:

‘…so scenario (1.3) planning scenario discussions (0.8) taking (.) individuals and their families through (0.8) erm (3.0) possible scenarios (0.6) and think in advance about (0.7) erm (0.7) ways to respond which doesn’t necess- and also (1.0) erm, to ensure that the advance care plan is an evolving (0.7) changing (0.8) not rigid (1.1) kind of, erm, planning system’ (John, Consultant Paediatric Neurologist, Andrew’s case study, lines 74-78).

These sections of speech suggested John (Consultant Paediatric Neurologist) used thinking

time to convey his opinions about the possible deterioration of young people. As an

experienced HCP, John was aware that communication needs to be clear and avoid

ambiguity. The clarity of communication was likely to be represented in John’s careful and

thoughtful explanations and his reliance onf factual details rather than personal

assumptions.

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In Bartholomew’s case study, Matthew (Consultant Paediatric Neurologist) generally used

‘we’ during his interview but spoke in the first person when he described how he felt he had

failed Bartholomew by not initiating ACPfYP earlier in Bartholomew’s condition. This may

have suggested the acceptance of personal responsibility for Bartholomew’s ACP and blame

for the resulting breakdown of ACPfYP: ‘I do feel maybe that’s a failure on my part’

(Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 541). Matthew

returned to using the collective ‘we’ when considering a solution and emphasised the

importance of changing his professional practice.

‘We have to start thinking about how we address this’ (Matthew, Consultant Paediatric Neurologist, Bartholomew’s case study, line 542-543).

Similarly, one HCP described the collective role of HCPs in ACPfYP, and the shared

responsibility for medical procedure:

‘we then done a number of specialist investigations like cardiac investigations and done a full kind of like MOT on him which included wheelchair evaluation, we looked at his cardiac medication, his salivary medication etcetera [sic]’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, lines 336-339).

Discussing care and treatment in the first-person plural pronoun of ‘we’ can indicate HCPs

perceived the care and treatment of young people as a collaborative process rather than an

individual responsibility. The importance of a co-ordinated approach to healthcare was also

suggested by the use of the word ‘obviously’ which appeared to highlight the clear and

necessary steps to look after the young person:

‘obviously we monitor his [Bartholomew’s] usage of [the ventilator machine] to make sure it’s set up appropriately, and same with the cough assist machine that he has also at home as well, but also, alongside that, because of his disease progression and obviously, the fact that it affects his respiratory function, we also have discussions about what this means in regard to survival rate but also end-of-life discussions and adding in end-of-life care’ (Joanna, Ventilation Specialist Nurse, Bartholomew’s case study, lines 27-34).

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Sarah (Paediatric Palliative Care Consultant) used ‘y’know’ or ‘you know’ eighty-six times

throughout her interview. These discourse markers were used frequently when Sarah

discussed important aspects of care, treatment, or ACPfYP, such as risks and benefits of

treatment, the potential of forcing ACPfYP discussions on young people and their family,

and the deteriorating condition of young people. The discourse markers appeared to be

used to help reinforce important information shared during the interview, by emphasising a

professional, and clinical, point of view. The discourse markers may also suggest Sarah’s

potential shyness, which is supported other elements of her interview: Sarah spoke

relatively quickly during her interview and her communication contained a lot of short

pauses, which could have indicated her thinking time during the conversation.

Furthermore, Sarah (Paediatric Palliative Care Consultant, Peter’s case study) said ‘To be

honest with you’ (lines 483-484) when she explained why HCPs do not provide written

information to families and young people to support them through ACPfYP. The

combination of words could be used as an expression of honesty to build trust between her

and the interviewer. Alternatively, it might be used to justify her chosen approach to

providing support to young people and their families during ACPfYP rather than explaining

why she did not adopt the approach asked by the question.

One HCP spoke about a difficult relationship with a colleague:

‘we did have (1.5) initial struggle with (0.8) erm (3.3) when (0.9) one of the consultants [at a different geographical location] was leading it (0.7) because (0.7) it- (0.2) there was kind of time delays on (0.7) trying to get things (0.7) revised and then the paperwork (0.4) back (0.1) so it was a (0.6) bit more (.) more difficult’ (Ruth, Consultant Paediatrician, Peter’s case study, lines 760-764).

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Ruth (Consultant Paediatrician) appeared to perceieve a professional hierarchy existed

between her and her colleagues, which she felt was evident from early in their relationship.

During this section of Ruth’s interview, there was evidence of increased hesitancy, stuttering

and disjointed sentences as she described one of the difficulties experienced. Hesitations

may have been representative of her professional inexperience compared to her colleagues

and could have represented the power imbalance within the relationship. Equally, the

increased tentativeness in Ruth’s speech may have been due to nervousness or

embarrassment of recounting this experience. Neverthless, the perception of a hierarchy in

HCP relationships in Peter’s case study was reported to be a barrier to engaging Ruth in the

ACPfYP process. As a result, it seemed Ruth (Consultant Paediatrician) felt her power to co-

ordinatee support for Peter (Young Person) and Lydia (Parent) had been reduced.

‘[Co-ordinating care with different professionals] can be difficult…yeah, sometimes co-ordinating things in general,not just for Peter but between hospitals, can be difficult’ (Ruth, Paediatric Consultant, Peter’s case study, lines 108-109 and 111-112).

The difficulty in clearly articulating ACPfYP was witnessed in interviews with four HCPs. Ruth

(Consultant Paediatrician) was very hesitant when giving her definition of ACPfYP, and her

interview included a lot of pauses:

‘I suppose (1.2) not (1.4) it’s a plan (0.4) I suppose (0.3) for (0.9) the child or young (.) young person (0.5) erm (0.2) which gives (.) a plan of (1.1) I suppose (.) what (0.5) how (.) they’d like (.) things to be now (0.4) and how they’d like things to be (0.8) in the future’ (Ruth, Paediatric Consultant, Peter’s case study, lines 121-124).

Ruth’s hesitations appeared to be more prominent than during the rest of the interview.

Ruth also smacked her lips a few times and used other discourse markers like ‘I suppose,’

‘erm’ and ‘it may well be,’ which could have represented uncertainty. Ruth’s definition of

ACPfYP was also very general and she talked about young people planning ‘how they’d like

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things to be’ (line 124) without any specific information. As with other HCPs, Ruth’s

knowledge and understanding of ACPfYP became clearer as her interview progressed and

was generally focused on medical interventions. On reflection, Ruth’s hesitations and use of

discourse markers, as with explanations of ACP from young people, may have represented a

difficulty articulating ACPfYP rather than a lack of understanding about a definition.

In an interview for Peter’s case study, Mary (Hospice Clinical Manager) combined ‘we’ with

‘you know’; these discourse markers suggested these were her personal opinions and could

also have emphasised her experience, knowledge, and understanding in the care of young

people:

‘we will always act, you know, on our children’s best interests’ (Mary, Hospice Clinical Manager, Peter’s case study, lines 384-385).

In contrast, Hannah (General Paediatrician) spoke in the third person for a lot of her

interview:

‘I’m sure there are [training courses], especially if you’ve got an interest in palliative care, but obviously to do that course on top of every other course you try and do within your professional world is, is quite difficult’ (Hannah, General Paediatrician, Miriam’s case study, lines 425-428).

When asked about access to training, Eve (Consultant Respiratory Physiotherapist)

emphasied her negative opinion:

‘absolutely not, no, no’ (Eve, Consultant Respiratory Physiotherapist, Bartholomew’s case study, line 746).

The repetition of words in Eve’s quote could represent the strength of her personal views,

and frustration with, her ability to provide levels of care.

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There were also occasions during interviews where participants did not answer, or only

partially answered, questions that were asked; instead, they moved to a different question

they wanted to answer. Changing the direction of the interview can sometimes indicate that

participants wanted to lead the conversation or were attempting to regain a perceived loss

of power during the interview. On the other hand, HCPs were able to share their expertise

and personal opinions about ACPfYP and so redirecting the conversation slightly should not

always be viewed negatively. For example, Sarah (Paediatric Palliative Care Consultant) was

asked about the information that was given to support Peter’s family during ACPfYP, but

aside from saying ‘not at any great detail,’ (line 441) she spoke about her approach of

discussing ACPfYP:

‘the main thing I think was very much talking about (0.4) provision of d- (.) the obvious thing that comes to mind was the- (.) is the provision of community nursing (0.5) and the challenge around (0.4) the fact that (0.3) although (0.4) there was a- (.) a- (.) an expressed preference for (0.2) if we looked to end-of-life and (.) and (.) clearly we haven’t which is great (0.9) erm (0.3) ((smacked lips))’ (Sarah, Paediatric Palliative Care Consultant, Peter’s case study, lines 442-446).


Discourse markers may sometimes suggest the presence of power dynamics in relationships.

The discourse markers used by participants in the interviews for this study could intimate

that a power hierarchy occasionally existed during interviews, but on reflection they were

more likely to be explained by alternative reasons. Young people generally displayed simple

language, and hesitations and pauses, which is likely to have been due to their limited

cognitive abilities and the difficulty in finding words to express themselves. Some of these

hesitations and pauses were also evident in the interviews with parents/carers, which is

likely to be explained by thinking time as they searched for the correct words to articulate

their views. Yet, unlike young people, parents/carers were more likely to find the

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terminology they wanted after the thinking time. HCPs often spoke with greater confidence,

and used language, hesitations and pauses, to help share their professional expertise and

convey their personal opinions, and experiences, of ACPfYP.

7.4 CHAPTER SUMMARY

During interviews, discourse markers were probably best explained by participants

searching for the correct words, and by HCPs being careful to share factual information and

personal opinions when desired. However, some participants reported that a medical

discourse was present in discussions as part of the process of ACPfYP. There were further

suggestions that this perceived use of a medical discourse occasionally created a barrier to

engaging young people and their parents/carers in ACPfYP. The barrier was purportedly

more evident when young people had limited verbal and cognitive abilities. However, there

was limited data to suggest that a medical discourse in discussions during ACPfYP were also

present in the documentation of ACPfYP.

Some participants also reported perceptions of a hierarcy of power during the collaborative

process of ACPfYP. When this hierarchy was felt to exist, participants reported it could

create a barrier to engaging young people and their families. When parents/carers sought

to redress the power imbalance within ACPfYP discussion and documentation, it was

generally considered to be successful. Some participants spoke about their experiences of

HCPs redistributing some power in the process; in these instances, participants felt the

engagement of young people and their family was facilitated by communicating in patient-

friendly language and avoiding a medical discourse. Participants also suggested that devising

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user-friendly paperwork would help move towards a greater power balance in relationships

during ACPfYP, and so also facilitate greater engagement of non-HCPs.

Conclusions have been reached by analysing the interviews with individual participants in

the study. It is recognised that these were perceptions from individual interviews rather

than an observation of the direct communication between participants during the

discussion and documentation of ACPfYP. The potential for both the interviewer and the

interviewee to construct each other’s understanding was also acknowledged as a limitation

to the analysis, but it was recognised that this construction during the present can be

viewed as the best way of understanding the past (Josselson, 2009).

Chapter 8 presents a discussion of the findings as a result of the thematic analysis and the

CDA.

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CHAPTER 8 - DISCUSSION8.1 CHAPTER INTRODUCTION

The previous two chapters set out the findings from the study conducted with young

people, their parents/carers, and HCPs, to explore their views and experiences of ACPfYP

and the engagement of young people in their own ACP. This chapter presents a discussion of

the findings to help understand these views and experiences within the context of the wider

literature on the subject. To better understand the data, the discussion will be presented

under six themes: understanding of advance care planning for young people (ACPfYP);

advance care planning for young people (ACPfYP) in practice; communication; education

and training; relationships; and organisational structure and culture. These themes will be

discussed in relation to the study aim and objectives (see Chapter 5) and will identify the

barriers and facilitators to engaging young people in ACPfYP. A subsequent sub-section will

synthesise the findings under three themes: misperception of terms; hierarchies of power in

relationships; and flexible and innovative organisational structures and cultures. A summary

of the chapter will bring together the main discussion points.

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8.2 THEME 1: UNDERSTANDING OF ADVANCE CARE PLANNING FOR YOUNG PEOPLE (ACPFYP)

The first theme relates to participants’ understanding of ACPfYP and helps recognise

whether young people, their parents/carers, and HCPs identified characteristics of ACPfYP

and what it was intended to do. To meet the third objective of the study, this theme will

consider how different participant groups understood ACPfYP, their resulting expectations

of the process, and the facilitators and barriers to engaging young in the process.

Potential complicating factors for the engagement of young people in ACPfYP were their age

and cognitive difficulties (Tolle and Tilden, 2002; Joseph-Williams et al., 2014; Lotz et al.,

2015; Zadeh et al., 2015; Freytag and Rauscher, 2017). The Mental Capacity Act 2005

recognised the importance of initiating ACP discussions with young people before their

condition deteriorates too far to facilitate their engagement (Hayhoe et al., 2011). Evidence

from this study suggests understanding of ACPfYP was often manifested in the developing

conversation during the interview rather than during specific interview questions. When

interpreting the data, it was evident that the majority of participants (n=13/15) had a clear

understanding of ACPfYP. Yet rather than the different perceptions of ACPfYP being

attributed to the age of the participant, data across both the thematic and CDA chapters

indicates a different understanding of ACPfYP between the case studies. There was

agreement among young people, their parents/carers, and HCPs that ACPfYP should

ultimately aim to improve the care of young people by, for example, planning for their

future care and including their wishes. By adopting this anticipatory viewpoint, findings

show ACPfYP was frequently discussed when there was a deterioration in the health of the

young person rather than using it proactively to forward plan for deterioration, as required

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by current legislation and guidance (Nursing & Midwifery Council, 2010; Together for Short

Lives, 2014; Care Quality Commission, 2016a).

The study also revealed evidence of a misperception of ACPfYP among some participants.

This finding about the ambiguity of ACPfYP corresponds with previous research which

highlighted confusion around the definition of ACP (Robinson et al., 2013; Russell, 2018).

Elizabeth (Grandparent) mistook a carer’s assessment for ACPfYP, and Rachel (Parent)

synonymised ACPfYP and plans for end-of-life care. In Bartholomew’s case study, there was

uncertainty from Bartholomew (Young Person) and James (Parent) about the definition of

ACPfYP and what it was intended to do. Participants in the study suggested the ambiguous

definition of ACPfYP was a potential barrier to engaging young people in the process. The

vague, or unclear, descriptions may be an indication for people to express themselves more

clearly during the ACPfYP process, but confusion about the definition of ACPfYP was

apparent in the interviews with non-HCPs in three of the four case studies.

In addition to the misperception of what constituted ACPfYP, data from interviews signalled

the challenge for some participants to articulate their understanding. For example, Andrew

(Young Person) and, to some extent, Bartholomew (Young Person) found difficulty in

communicating their thoughts about ACPfYP. The interviews with HCPs involved in

Bartholomew’s ACP also suggested a lack of clarity about the timing of ACPfYP discussions

and the documentation of discussions. Ambiguity was further complicated within

Bartholomew’s case study because participants reported that medical records did not

indicate who was involved in discussions and with whom information had been shared.

Knowledge about the impact of defining ACPfYP has been developed by this study to

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indicate the effect of such uncertainty, which was caused by a reported misperception of

ACPfYP and ambiguity of terminology. James (Parent, Bartholomew’s case study) shared his

anxiety and concern about Bartholomew’s future care because of ambiguity when defining

ACPfYP, and what he percieved the consequences to be for care provision.

Misperception could be attributed to younger patients not having an understanding of

death, the dying process and the impact of palliative care, and a resulting negative cultural

attitude towards death and dying (Coleman, 2013; Hughes et al., 2018). As maturity can still

be developing into someone’s 20s and 30s (Johnson et al., 2009), young people’s

understanding of ACPfYP needs to be judged individually and cannot be decided purely on

age alone (Johnson, 2009). Maturity is a difficult concept to ascertain and invokes concepts

of subjective decision-making, experiences, beliefs and values, intentions and intuitions,

emotions, and self-awareness (Albert and Steinberg, 2011). Findings from the data suggest

parents/carers sometimes advocated on behalf of young people and made decisions about

the ability of young people to be engaged in their own ACP. For example, Elizabeth (Parent,

Andrew’s case study) reported that she considered both Andrew’s (Young Person) age and

cognitive processing when determining his ability to be actively engaged in ACP discussions.

However, evidence from this study suggest age alone was not a barrier to the engagement

of young people in their own ACP, but their level of cognitive understanding, and cognitive

ability, should also be considered.

Participants from across the case studies indicated that they understood ACPfYP was a

forward planning document to anticipate a deterioration in the health of the young person.

In the case studies of Andrew and Peter, participants reported that a non-medical focus was

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often a secondary consideration during care planning, although they merged with the

wishes of the young people and their parents/carers to create a more holistic definition of

ACPfYP. In agreement with previous research, these views were sometimes shaped by a

medical discourse of language within the relationships in ACPfYP discussions (Together for

Short Lives, 2012; Bell, 2013; Joseph-Williams et al., 2014). This study adds that participants

perceived the effects of a medical discourse, and the potential for power dynamics within

relationships, were exaggerated when young people had limited cognitive, and

communication, abilities. The effect of this medical viewpoint was that non-clinical

participants believed ACPfYP was given more of a medical perspective than expected for

some young people and their parents/carers. In the case studies of Bartholomew and Peter,

there was potential for the perceieved use of a medical discourse language of some HCPs to

trickle down to others in the ACPfYP process: James (Parent, Bartholomew’s case study) and

Lydia (Parent, Peter’s case study) both discussed ACPfYP and shared their experiences of

care planning using medical terms. Therefore, understanding of ACPfYP was not based on

the age of the young person alone, but was related to the reported perceptions of power

dynamics in the ACPfYP process, and possibly the greater power dynamics in society (Carter

and Ford, 2013). Bureaucratic inequalities in relationships may indicate that opportunities to

rectify the power imbalance are limited (Juhila et al., 2010). This study adds to the existing

research by suggesting that age and knowledge inequalities may be redressed by issues

around maturity, confidence, and young people and parents/carers taking the initiative to

encourage a non-medical discourse of communication within ACPfYP to remedy the

perceived power imbalance they reported in their interviews.

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The findings of this study concur with previous research, which highlighted the lack of a

shared understanding of ACPfYP and its relationship with other aspects of care and

treatment (O’Hare et al., 2016). Furthermore, this study fits with the ideas that the lack of a

standardised conceptual framework for ACPfYP potentially led to an over-medicalised

processes, and may be based on opinions, attitudes, beliefs and personal experience, rather

than consensus (Lewis et al., 2016). Yet the engagement of Andrew (Young Person) and

Bartholomew (Young Person) showed young people have participated in their own care

planning. Even Peter (Young Person), who had limited communication abilities, could

communicate some of his feelings with Lydia (Parent). Therefore, the evidence from this

study corresponds partially with previous research that the misperception of ACPfYP can be

a barrier to engaging young people in the process (Scott et al., 2013).

Some of the findings of the study were consistent with previous research that there is

ambiguity and misperception of the aims of ACPfYP. Basing a comprehension of ACPfYP

solely on the age of the young person ignores their level of maturity and cognitive ability,

thereby potentially creating a barrier to their engagement. Misperception could also be

attributed to the use, or perceived use, of a medical discourse by HCPs, which young people

and parents/carers felt influenced their definition and understanding of ACPfYP. Where

participants reported hierarchies of power in ACPfYP, they felt that the engagement of

young people in their own care planning could be facilitated by redressing the perceived

power imbalances during the discussion and documentation of ACPfYP. Developing a

standardised, structured, and holistic ACPfYP framework could encourage the shared

discussion and documentation of all parties.

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8.3 THEME 2: ADVANCE CARE PLANNING FOR YOUNG PEOPLE (ACPFYP) IN PRACTICE

The second theme considers how ACPfYP works in practice, and is related to participants’

understanding of the term. A misperception of ACPfYP can produce unrealistic expectations

(Durall et al., 2012). For example, focusing on medical interventions, treatments and

management of conditions might risk excluding non-medical wishes of young people. This

theme will meet all three objectives of the study by exploring the views and experiences of

participants using ACPfYP, the timing of implementation of ACPfYP, and the barriers and

facilitators to the engagement of young people.

Evidence from the interviews reveal varying experiences of ACPfYP in practice, which

resulted in contrasting opinions of what ACPfYP was hoping to achieve. There was a general

consensus between the participants in the case studies of Andrew, Peter, and Miriam that

circumstances surrounding ACPfYP were positive – ACPfYP was in place; plans were

discussed and, where necessary, documented and revised; and relationships and

communication generally facilitated engagement in the process. However, findings also

reveal participants were not always clear about a definition of ACPfYP. This misperception

led to confusing ACPfYP with an EoL plan or a carer’s assessment. Understanding of, and

engagement in, ACPfYP appeared to be complicated because of a breakdown in

communication between HCPs and young people and their parents/carers, the cognitive

ability of young people, or the reported use of a medical discourse by HCPs during ACPfYP

discussions. A unique and significant finding of this study is that participants indicated these

factors created barriers to the engagement of young people in their own care planning, and

the engagement of parents/carers involved in discussions on behalf of their children.

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Previous research indicated a lack of clarity about who initiated ACP (O’Hare et al., 2016).

However, this study suggests ACPfYP is usually initiated by consultants, which is what young

people their parents/carers expected and wanted. Sarah (Paediatric Palliative Care

Consultant, Peter’s case study) suggested ACPfYP could be initiated by any HCP, but young

people and their parents/carers agreed that ACPfYP is best initiated by consultants because

of their expert knowledge and experience of different conditions and ability to lead a co-

ordinated care package. This finding agrees with previous research (Yotani et al., 2017) but

ignores the valuable role of other HCPs in identifying potential triggers to initiate the

discussions. Any HCP may be able to recognise possible indicators to pinpoint which

professionals could be included in ACPfYP (De Vleminck et al., 2016). Different HCPs across

the case studies believed their communication skills, and the education and training they

received, helped them identify triggers to initiate ACPfYP, and so facilitate the engagement

of young people in the process. This finding supports previous research which suggested

better engagement of relevant individuals in the ACP process is thought to lead to better

health outcomes (Carabez and Scott, 2016; Rietjens et al., 2016; Hughes et al., 2018).

Findings of the study did not agree with Yotani et al. (2017) that paediatricians are less likely

than other HCPs to discuss ACPs with young people. Instead, experienced and

knowledgeable HCPs like John (Consultant Paediatric Neurologist) and Sarah (Paediatric

Palliative Care Consultant) felt paediatric HCPs were in a better position, and so may be

more likely, to initiate ACPfYP than colleagues in adult care because of their contact with

young people at an earlier stage of their condition. Participants reported that the

established relationships young people and their family had with HCPs in paediatric care

also facilitated the engagement of young people in their ACP.

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This study reveals that ACPfYP discussions and, if possible, completion of documentation

should take place when the condition of young people is stable and both the young people

and their parents/carers feel able to engage in sensitive discussions. These findings agreed

with previous research that some young people and their parents/carers were reluctant to

discuss ACPfYP when prognosis of young people was poor, and initiating ACPfYP at this time

created a barrier to engagement. (Lotz et al., 2013; Beecham et al., 2016). Evidence from

across the case studies also suggested ACPfYP was initiated when the young person was in

their mid-teenage years. Therefore, the data from this study is in keeping with other

research which concluded that young people being aged in their mid-teens, and their

condition being stable, appeared to be the optimal time for them initiating their ACP and

engaging them in the process (de Broca, 2016). Participants believed that beginning ACPfYP

discussions at this age would also ensure options are discussed, structured documention is

completed, and plans are implemented before young people are transitioned to adult care.

If discussions around ACPfYP do not occur, and are not documented before transition

occurs, evidence suggested discussions around future plans were sensitive and difficult (NHS

Education for Scotland, 2011). Therefore the transition phase itself is a potential barrier to

the engagement of young people in ACPfYP (Together for Short Lives, 2015c). To avoid the

possible misunderstanding of responsibilities between the adult and paediatric teams during

transition, HCPs in this study recommended discussions take place, and are documented,

while young people are under the paediatric care team. The documented ACPfYP can then

be passed to the adult care team. This finding fits with existing guidance around the age at

which young people should be transitioned from paediatric to adult care (Together for Short

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Lives, 2015c; The National Institute for Health and Care Excellence, 2016b, 2016a;

McCallum, 2017).

Furthermore, effective planning for transition, and for future care, can also enhance

engagement of young people and their family in ACPfYP (Care Quality Commission, 2014;

McManus et al., 2015). Early discussions about EoL and ACP might facilitate an easier

transition from paediatric to adult services (Zadeh et al., 2015). Palliative care provision

should result in a smooth and well-planned transition period so people get the care they

need (Together for Short Lives, 2015a; Care Quality Commission, 2016a). This study reveals

transition could have a significant impact on the initiation, discussion, and documentation of

ACPfYP. Findings from Bartholomew’s case study, in particular, agree with previous research

with COPD patients about an imprecise transition point between different stages of care

(Patel et al., 2012). Matthew (Paediatric Neurologist, Bartholomew’s case study) felt the lack

of clear, shared goals in Bartholomew’s case study resulted in HCPs working co-operatively

but less than effectively to engage Bartholomew (Young Person) in his ACP. Similarly, some

participants in Andrew’s case study reported that Andrew’s ACP was documented, but the

interviews across the case study as whole suggested communication of the care plan was

interrupted by Andrew’s transition period. Therefore the seamless transition from

paediatric to adult services, and previously identified challenges associated with transition,

continued to be a potential barrier to the engagement of young people in their ACP

(National Health Service South East Coast Clinical Senate, 2014; Mitchell and Dale, 2015).

Most instances of ACPfYP in the case studies were documented. However, the format of

documentation can be problematic (Beringer and Heckford, 2012; Billings and Holdsworth,

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2013), which was apparent in the case studies as different participants said that many

documents used for ACPfYP were based on varieties of other documentation, such as for

MND. The interview with one consultant contained his rationale for developing his own

paperwork. Standardised structured documentation provides consistency through the

recording of information, making it easy to share, and straightforward for all HCPs to

understand (Munyisia et al., 2011; Lewis et al., 2016). A standardised and structured format

for documentation can also contribute to effective communication of ACP processes, HCP

training, and so facilitate provision of person-centred palliative care across different care

settings (NHS Education for Scotland, 2011; Scottish Government, 2015; Finucane et al.,

2018). Consistent and recognisable documentation was introduced in Scotland in 2018 to

help HCPs share information, update the plans in real time, and improve opportunities for

collaborative working (The Scottish Government 2016; 2018). Unclear, or incomplete,

documentation was reported by different participants in Bartholomew’s case study, and

meant one HCP could not identify who was involved in ACPfYP discussions. However,

problems around documentation appeared to be more about effective communication skills

between HCPs and a variety of paperwork alone did not have a bearing on engagement of

young people in the process of their ACP.

Findings from the interviews in the case studies of Andrew and Peter suggest written

information and support was sometimes made available during the ACPfYP process, and

young people and their parents/carers could occasionally be directed towards websites.

However, participants reported this practice was not universal. These findings are consistent

with previous studies, which suggested written information and support following the

initiation of ACP for adults was not always available to guide decision-making (Fried and

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O'Leary, 2008; Ahluwalia et al., 2015). Providing written information may help guide and

inform ACPfYP discussions, and facilitate the engagement of patients (Hammes et al., 2005;

Jacobs et al., 2015; De Vleminck et al., 2016). Yet participants in Bartholomew’s case study

suggested young people and their parents/carers did not always have the support they

wanted and this produced anxiety and worry about future care options. Therefore, the lack

of written material, and support to inform young people about ACPfYP sometimes appeared

to act as a barrier to engaging them in the process, and is a unique contribution to

understanding this topic which has arisen from this study.

The interviews for this study suggested young people, their parents/carers, and HCPs

recognised ACPfYP may not produce any immediate impact on the provision of care.

Instead, participants from across the case studies reported that engaging young people in

ACPfYP can ease worries and concerns about future care ACPfYP puts into place. These

findings concurred with previous research which demonstrated ACP reduced anxiety and

provided greater reassurance for young people, and their parents/carers, about future care

needs being met (Lyon et al., 2014).

The study suggested facilitators to initiating ACPfYP included beginning the process when

young people were in their mid-teens and their condition was stable. ACPfYP should be

introduced before transition to adult care. There was no evidence from this study to agree

with previous research that the variety of available ACPfYP documentation created a barrier

to engage young people in the process (Beringer and Heckford, 2012; Billings and

Holdsworth, 2013). However, participants believed that standardised documentation could

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facilitate the communication of ACPfYP, provide opportunities for greater collaborative

working, and make clear the process for recording and updating the plan.

8.4 THEME 3: COMMUNICATION

The third theme considers the role of communication in ACPfYP and includes the function of

power within communication. Clarity of communication can improve co-ordination of care,

and providing a common language for communication can reduce opportunities for

misperception of terms (Gold Standards Framework, 2019). This theme will meet objective

one and objective three of the study by exploring the views and experiences of participants

using ACPfYP and identifying the barriers and facilitators to the engagement of young

people.

The findings of the study show that communication plays a key role in conveying

information about ACPfYP and maintaining relationships during the discussion and

documentation of ACPfYP. A medical discourse of communication existed in some

participant interviews, and there was evidence this could be transferred to, and create a

barrier to engaging young people in, ACPfYP discussions. However, there is no evidence to

suggest this barrier is directly transferred to ACPfYP being documented.

Billings and Holdsworth (2013) argued ACP did not allow adequate time and space for

sensitive discussions. This study found communication was not always personalised or

individual to young people, such as in the case studies of Bartholomew, Peter and Miriam.

An additional finding from the case studies of Bartholomew and Peter was that a perceived

medical discourse in language, coupled with a discourse of power, can create a barrier to

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engaging young people in ACPfYP. This new finding suggested that where communication

included medically-focused language, young people could be at a disadvantage when their

cognitive functioning is compromised. A power hierarchy was also reported to be present

during interviews with some HCPs for this study, which non-clinical participants felt was

transferred to some ACPfYP discussions and resulted in young people, and their

parents/carers, not fully understanding and engaging in conversations about their planning

process. Young people recognised HCPs have valuable knowledge and experience, which

was crucial to inform ACPfYP, and this study supports previous research demonstrating the

need for clear and simple communication (Tsai, 2009; Marie Curie, 2016).

In agreement with previous research, this study indicated that poor, and incorrect, timing of

communication can create a barrier to engaging young people in their care planning (Lyon

et al., 2004; Garvie et al., 2012). Communication can help relax and build relationships with

patients (Sinuff et al. a, 2015; Marie Curie, 2016; Travers and Taylor, 2016). Alternatively,

communication may increase tensions in relationships, and so further reduce opportunities

to engage young people in ACPfYP (Ahluwalia et al., 2015). For example, Matthew

(Paediatric Neurologist, Bartholomew’s case study) felt that his avoidance of discussing

sensitive issues was a failure to communicate effectively with Bartholomew (Young Person)

and James (Parent, Bartholomew’s case study). There was agreement between the findings

in this study and research conducted by Lotz et al. (2015) that open, honest communication

can facilitate the engagement of young people. There was also concordance with previous

research that communication needs to be developmentally- and age appropriate to

facilitate the engagement of young people in their ACP (Lotz et al., 2015; Zadeh et al., 2015;

Hughes et al., 2018). The data revealed the importance of communication as part of

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developing a relationship with young people and their family prior to initiating ACP (Jack et

al., 2018a). A new finding from this study was that communication which people in the

process of ACPfYP perceived is governed by a discourse of power is believed to create a

barrier to engaging young people. Different participants felt that power was evident through

the use of a medical discourse in interviews with HCPs for Peter’s case study, and was a

perceived barrier to engaging non-HCPs in the discussion of ACPfYP for Bartholomew, Peter,

and Miriam (Young People).

Clear information can also help young people understand the care they need and develop

skills to convey their wishes (Lyon et al., 2009, 2014; Christenson et al., 2010; Dallas et al.,

2016; Yotani et al., 2017). An emphasis on developing person-centred communication skills

could help facilitate the engagement of young people in ACPfYP, and reduce HCPs’ fears and

anxieties around discussing sensitive topics (Lotz et al., 2015; Jack et al., 2018a). There was

limited agreement with previous research which identified the reluctance, discomfort or

avoidance of HCPs to initiate or participate in ACPfYP discussions (Lotz et al., 2015; Jack et

al., 2018a). Some HCPs identified the hesitancy of colleagues to participate, but HCPs within

the four case studies were all willing to be involved in ACPfYP. Nevertheless, HCPs’

identification of colleagues who may not be able, or keen, to engage in discussions around

ACPfYP or EoL might suggest a potential barrier to young people’s engagement in their own

ACP (Jack et al., 2018a).

The findings from study agreed with previous research that effective communication within

ACPfYP will help create a more conducive atmosphere to engage young people, and lead to

a better experience of ACP for everyone involved in the process (Jack et al., 2018a). Young

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people are in the best position to discuss their own wishes, but communication can often be

a barrier to their engagement in ACP (Durall et al., 2012; Lyon et al., 2013, 2017). To

facilitate engagement, communication with young people needs to be person-centred,

clear, timely, and both age- and developmentally- appropriate. HCPs need to avoid using a

medical discourse when communicating with young people and parents/carers because this

risks creating a barrier to their understanding and engagement.

8.5 THEME 4: EDUCATION AND TRAINING

This theme presents the attitude towards education and training for HCPs in relation to

ACPfYP. Research has indicated training can enhance HCP confidence and knowledge in

facilitating ACP (NHS Education for Scotland, 2011; Detering et al., 2014). However,

evidence from the data suggested mixed opinions among HCPs about the availability and

effectiveness of education and training to develop knowledge and skills around ACPfYP. This

theme will meet all three objectives of the study by exploring the views and experiences of

participants using ACPfYP, exploring the timing of ACPfYP, and identifying the barriers and

facilitators to the engagement of young people.

Four HCPs across the case studies of Andrew and Peter generally considered themselves

knowledgeable and proficient when it came to ACPfYP. Two HCPs, in the case studies of

Andrew and Peter, felt training was adequate, accessible or at least provided knowledge

and expertise that was already within their capabilities. These HCPs believed they would

more likely be involved in delivering, rather than attending, the training.

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Conversely, other HCPs (n=6) across the case studies raised concerns about the availability,

accessibility, and cost of training, which created a barrier to their attendance. Unease was

expressed in the case studies of Peter and Miriam about the extent, and frequency, of

training available. Some HCPs expressed that training did not exist or it was focused on

cancer patients. Additional concerns identified the geographical distance required to travel

to training courses, which was problematic because of heavy workloads and additional time

constraints. The cost of training resulted in many non-statutory organisations being priced

out of attending or only being able to send one member of staff. These findings agree with,

and update, previous research about the financial implications of releasing staff to attend

ACP training (NHS Education for Scotland, 2011; Klingler et al., 2016; Rietjens et al., 2016).

Evidence from the case studies suggested that relying on colleagues for support could be

problematic because of the lack of initial training and education for HCPs. This finding

suggests a barrier to engaging young people in ACPfYP because of HCPs’ reliance on peer

support instead of formal training to initiate and use ACPfYP. Mary (Clinical Hospice

Manager, Peter’s case study) suggested a training programme underpinned by shadowing

and mentoring would ensure key advice was communicated to engage young people, and

communication skills were cultivated in the ACPfYP process. This idea of including HCPs to

deliver training was identified by previous research, and was developed in this study by the

idea of mentoring and shadowing (Billings and Holdsworth, 2013).

The failure to engage HCPs in relevant, affordable training to enhance their skills and

capabilities around ACPfYP has resulted in ambiguous communication of the definition and

aims of ACPfYP in Andrew’s case study, and ACPfYP not being initiated early enough in

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Bartholomew’s case study. Poor communication of the aims of ACPfYP, and its untimely

initiation, helped create a barrier to engaging young people in ACPfYP in the case studies of

Bartholomew and, to a lesser extent, Andrew. Evidence from the case studies of Peter and

Miriam demonstrated these factors also impacted on the engagement of parents/carers of

young people with verbal or communication difficulties.

Access to training was also a potential facilitator to engaging young people in ACPfYP by

building the confidence, knowledge, and skills of HCPs (De Vleminck et al., 2016). Providing

techniques to introduce conversations about ACPfYP can ease worries and concerns of

those involved in the process; HCPs will be better placed to help young people express their

wishes in a safe and comfortable environment (Durall et al., 2012). Greater education for

HCPs can increase the ability of HCPs to delegate tasks and share information about ACPfYP,

therefore facilitating their engagement in the process (Boddy et al., 2013). In this sense,

ACPfYP should not be left up to clinical specialists but should instead be integrated into

clinical settings (Lund, 2015; Jack et al., 2018a, 2018b).

Support for HCPs to initiate and use ACPfYP was varied. Some HCPs in the case studies of

Bartholomew, Peter and Miriam indicated evidence of effective support, such as peer

support and written information. Other HCPs in the same case studies indicated support was

unavailable, or HCPs were expected to find their own means of support. The lack of

accessible support led to some HCPs feeling lost and let down, or looking to inexperienced

peers for assistance and information. Consequently, some HCPs were not able to provide

effective support to young people and their parents/carers, or to engage young people and

support them effectively in ACPfYP. The inconsistent picture of support for HCPs created a

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barrier to the engagement of Bartholomew (Young Person), but the impact was unclear in

other case studies.

This study largely agreed with previous research that opportunities for HCPs to attend

relevant and affordable training were sometimes limited. Support for HCPs was inconsistent

to both initiate and implement ACPfYP. Consequently, HCP feeling unprepared at the

beginning of ACPfYP, and the lack of support as the process continued were barriers to

engaging young people in their own ACPfYP.

8.6 THEME 5: RELATIONSHIPS

The fifth theme considers the role of relationships in ACPfYP, and includes the function of

power in relationships between all people involved. The findings indicated two important

aspects to the importance of relationships within ACPfYP: firstly, the significance of

developing effective relationships prior to initiating ACPfYP; and secondly, the maintenance

of effective relationships throughout the process of ACPfYP. This theme will meet the first

and third objectives of the study by exploring the views and experiences of participants

using ACPfYP and identifying the barriers and facilitators to the engagement of young

people.

Previous research identified the importance of building relationships with the young person

and their family prior to initiating ACPfYP (Jack et al., 2018a). If young people are given the

power to share their wishes as part of ACPfYP discussions, improved relationships can

contribute to a person-centred process (Royal College of Nursing, 2004; Care Quality

Commission, 2018). There was agreement from across the case studies that parents/carers

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were in the best position to communicate the wishes of non-verbal young people because

of the long-standing relationship parents/carers have with their children. All participant

groups in this study also felt that ACPfYP should be initiated by someone who knows the

young people and their parents/carers. Where this relationship had not been developed in

Miriam’s case study, there was a clear breakdown in the communication and the

relationship between Rachel (Parent) and the consultant. Time and effort to build

relationships in the case studies of Andrew, Peter, and Miriam, ensured communication

between all parties was generally clear, open, and honest. HCPs have a duty to protect the

developing autonomy of young people as far as possible rather than delegate choices to

their parents/carers (Beach, 2009; British Medical Association, 2018). Therefore, developing

this relationship with young people prior to beginning ACP discussions was important to

facilitate the engagement of young people in their own care planning.

Good relationships provide the opportunity to form effective working networks and share

best practice (Noyes and Lewis, 2005). There was some clear evidence of effective

relationships in the case studies of Peter and Miriam: information was shared, and ACPfYP

was an inclusive discussion which utilised the knowledge and understanding of different

HCPs alongside those of young people and their parents/carers.

Evidence from across the case studies also demonstrated relationships can be complicated

by a discourse of power which can sometimes be manifested in communication.

Terminology, ambiguity, and the use of a medical discourse, can unnecessarily complicate

discussions and sour relationships. Rachel (Parent, Miriam’s case study) outlined the

tensions and difficulties in the ACPfYP process when prior relationships with a consultant

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had not been developed. Rachel (Parent, Miriam’s case study) experienced poor

communication, within a discourse of power, from a previous consultant; this interaction led

to conflict and tension. Conversely, Rachel’s relationship with Hannah (General

Paediatrician) was built on mutual respect; honesty and openness helped build trust and

allowed the free exchange of information. A similar relationship between Lydia (Parent) and

the HCPs in Peter’s case study contributed to the positive experience of ACPfYP. Therefore

power in relationships could be legitimate and positive, but power can also have a negative

effect on relationships (van Dijk, 2016). This study adds to the existing knowledge-base by

suggesting positive relationships in ACPfYP gave reassurance to young people and their

parents/carers in case of future deterioration of the young people’s condition. As a result,

long-standing relationships, which were developed in informal environments, facilitated the

engagement of young people in their own ACP.

Relationships between young people and their parents/carers were generally very positive,

particularly in the case studies of Peter and Miriam, when the young people were non-

verbal or non-communicative. Sarah (Paediatric Palliative Care Consultant, Peter’s case

study) explained these relationships as the positive element of gatekeeping: parents/carers

protected their children when they considered them most vulnerable, and so the

relationship facilitated the inclusion of their views in the discussion and documentation of

ACPfYP.

In agreement with previous research (Hughes, 2018), the case studies of Bartholomew and

Peter, and Andrew’s to a lesser extent, suggested young people should be engaged in

ACPfYP discussions when possible. The potential for engagement depends on different

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factors such as the age of the young person, their cognitive ability and their capacity to

communicate (Tsai, 2009; Lotz et al., 2015; Kazmerski v, 2016; Hughes et al., 2018). Findings

from the case studies of Andrew and Miriam suggested some relationships between young

people and their parents/carers were a barrier to engaging young people in ACPfYP because

of perceptions of whether young people should be included in discussions and

documentation of their care planning (Greenfield et al., 2016). Overall, there is mixed

evidence from this study about the impact of gatekeeping on the engagement of young

people in their own ACP (Garrido et al., 2011; Greenfield et al., 2016).

The findings revealed relationships can be disjointed between HCPs, and young people and

their parents/carers. Evidence from across the case studies indicated many relationships

between HCPs were positive. However, some relationships, such, as in Andrew’s case study,

may be dominated by discourses of medicine and power. These discourses risked impacting

on the experience of ACPfYP by medicalising the process and creating a barrier to

engagement. This finding corroborates, and builds on, previous research, which recognised

the potential for over-medicalising the end of life and focusing more on medical

management of paediatric patients rather than providing holistic care (Mitchell and Dale,

2015).

Moreover, some professional relationships can be characterised by hierarchies of power.

Evidence from Bartholomew’s case study suggested consultants working in larger

organisations, and with more experience in ACPfYP, can sometimes dominate relationships

with other HCPs. However, there was no evidence from the case studies that inter-

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professional relationships between HCPs created a barrier to the engagement of young

people in their ACP.

Evidence from the data did not suggest tensions in relationships impacted on the use of

resources. Instead, the study indicated power within relationships can be beneficial for HCPs

because those with more power in their organisation had greater authority to influence how

ACPfYP works in practice. For example, John (Consultant Paediatric Neurologist, Andrew’s

case study) used his knowledge and experience to encourage colleagues to engage in

ACPfYP. The case studies suggested an ACPfYP process in which relationships are centred on

young people can help build the multi-professional team, share knowledge and experience,

and so

facilitate the engagement of young people.

Developing a prior relationship with young people and their parents/carers before initiating

ACPfYP was considered important to engagement of young people in their own care

planning. Relationships were more effective when HCPs did not dominate discussions with a

discourse of power. Instead, good relationships were exemplified by effective

communication, which included openness, honesty, and sensitivity. When young people and

their needs were placed at the centre of their ACP process, there was also a greater

opportunity to engage them in discussions and decision-making.

8.7 THEME 6: ORGANISATIONAL STRUCTURE AND CULTURE

This theme presents the impact of organisational structure and culture on initiating and

using ACPfYP. A strong relationship between organisational structure and organisational

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culture can contribute to patient outcomes (West, 2001). Evidence from the study indicated

mixed views from HCPs when exploring the impact of organisational structure and culture.

Findings will be discussed to determine the extent to which organisations facilitate or create

barriers to the engagement of young people in ACP. This theme will meet all three

objectives of the study by exploring the views and experiences of participants using ACPfYP,

exploring the timing of ACPfYP, and identifying the barriers and facilitators to the

engagement of young people.

The majority of parents/carers and HCPs (n=10) revealed working within a different

organisational structure would facilitate the engagement of young people in ACPfYP. This

finding agrees with previous research which suggested the structure of health systems does

not encourage routine deliberations of personal preferences (Butler et al., 2014). An

alternative way of working could be less focused on major conditions such as cancer, and

more inclusive of all conditions. Evidence from across Peter’s case study indicated

organisations may also benefit from a greater emphasis on local and out-of-hours provision

to offer a ACPfYP process which has young people’s needs, wishes, and care at the centre.

This study showed an alternative structure would help recognise that ACPfYP necessitates a

flexible and individual approach to discussions. Local provision of palliative care for young

people and their families living with LLCs and LTCs was recommended in the UK over a

decade ago, and has been supported both by more recent research and guidance provided

to NHS commissioners in England (Department of Health, 2008a; National Health Service

England, 2016; Rietjens et al., 2016). Local provision of services would facilitate the

engagement of young people by offering a patient-centred process which operates at their

pace (Together for Short Lives, 2015c). This study showed local provision could also help

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transfer the power-balance within ACPfYP from HCPs to young people and their

parents/carers. Therefore, a significant finding of this study was that local provision of

services to meet the needs of young people, rather than based on the capacity of the

organisation, would facilitate the engagement of young people in their ACPfYP discussions.

Sarah (Paediatric Palliative Care Consultant, Peter’s case study) suggested current structures

and systems were the best they could be, and major changes would not bring any

noticeable improvement to enrich the experiences of ACPfYP. However, IT systems used by

different organisations meant it was not always possible to share information between

systems and so communication can stall. James (Parent, Bartholomew’s case study)

highlighted the frustration and anxiety during the ACPfYP process which was caused by

misaligned IT systems. Deficient systems complicated the sharing of ACPfYP among HCPs;

and Rachel (Parent, Miriam’s case study) shared how these difficulties can create a barrier

to engaging parents/carers of non-verbal and non-communicative young people.

James (Parent, Bartholomew’s case study) identified financial and organisational problems

have intensified since austerity measures were implemented in the UK. Findings in this

study agreed with previous research that funding can impact on an organisation’s ability to

change structure or alter HCPs’ working patterns (West, 2001). The conclusions of HCPs in

the case studies of Peter and Miriam showed the availability of money, and the ability to

attend training and education, was identified as a particular barrier to engaging young

people in ACPfYP (NHS Education for Scotland, 2011).

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Study findings agreed with previous research that a multi-professional approach to ACPfYP

can help provide clinical expertise to the planning process (de Broca et al., 2016). However,

Peter’s case study highlighted the logistical problems of co-ordinating care across multiple

sites. Despite increased opportunities for training and education, the impact on

communication and building working relationships might be a barrier to young people’s

engagement in the discussion, and documentation, of ACPfYP. Andrew’s case study

indicated communication across multiple sites is also at risk of breaking down. Therefore the

findings of this study disagreed with the perceived benefits from integrating a large multi-

professional team (Firn et al., 2016). Smaller, locally-run, teams might help overcome some

of these problems and also co-ordinate out-of-hours or community-based case. This finding

challenges previous research which indicated a local model might be workable in the short-

term, and in geographical pockets, but would be unsustainable in the long-term (NHS

Education for Scotland, 2011).

Alternatively, the organisational culture can help to sidestep some of these challenges. John

(Consultant Paediatric Neurologist, Andrew’s case study) and Rachel (Parent, Miriam’s case

study) revealed a culture which is open to innovative practice, and has an outward-looking

view of approaching ACPfYP, can provide flexibility to facilitate the engagement of young

people. When HCPs are able and willing to work at weekends, like John (Consultant

Paediatric Neurologist, Andrew’s case study), the ACPfYP process is given the time to engage

all parties. This study discovered a working culture which is encouraging and progressive can

allow young people, or their parent/carer, to engage in a thriving ACPfYP process. However,

a shortage of money and resources has been a persistent problem impacting on the way

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organisations work and implement models of care, and so this barrier to engagement still

persists (Neuberger et al., 2013; Together for Short Lives, 2015a).

Financial constraints, the lack of 24-hour community-based care, and the previously-

identified problems around accessing and affording training, were identified across different

case studies as barriers to engaging young people in ACPfYP. HCPs were working the best

they could with the resources they had and within the structures they operated, but the

system strains were apparent to some participants, such as James (Parent, Bartholomew’s

case study). The result was a process of ACPfYP which aimed to engage young people but a

system which too often did not facilitate this process. A positive organisational culture can

provide HCPs with an opportunity to engage young people, but resulting workload pressures

can provide a further barrier to engagement.

8.8 SYNTHESIS OF FINDINGS

This chapter has highlighted a number of key themes to help understand the views and

experiences of young people, their parents/carers, and HCPs of ACPfYP. To better

understand the findings in the previous two chapters, this section will present a critical and

conceptual synthesis of the findings from both of these chapters. This overall synthesis will

relate the findings to facilitators and barriers of engaging young people in their own ACP

under the following key issues: misperception of terms; hierarchies of power in

relationships; and flexible and innovative organisational structure and cultures.

.

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8.8.1 MISPERCEPTION OF TERMS

A feature of previous research into ACP was the ambiguity around a clear definition of the

term “advance care plan” (see, for example, Russell, 2014; Sudore et al., 2017). Likewise,

some participants in the current study also reported a misperception of terms. Interviews

with two participants (Elizabeth, Grandparent, Andrew’s case study; and Rachel, Parent,

Miriam’s case study) highlighted ambiguity around the definition and aims of ACP. James

(Parent, Bartholomew’s case study) was familiar with ideas around planning for

Bartholomew (Young Person) but was not familiar with terminology around ACPfYP. These

instances suggest the potential for varied interpretations of terms such as “advance care

plan,” “end-of-life plan,” and “carers’ assessment,” which resulted in some participants

using the terms interchangeably and effectively treating them as synonyms (Liberman et al.,

2016). As a result, it is now understood the reported opportunities for confusion,

uncertainty, and vagueness exist in ACPfYP as well as ACP for adults, and there is a potential

barrier to engaging young people and their parents/carers in the process. However, this

would appear to be far from a simple issue. Emerging conversations during interviews

suggested the understanding of young people was complicated by their cognitive difficulties

rather than simply their conceptual understanding of ACPfYP. Previous literature has

identified cognitive impairment as a barrier to engagement in ACP (Brinkman-Stoppelenburg

et al., 2014; Zadeh et al., 2015), but most previous research focused on the cognitive ability

of adult patients. This study develops the knowledge-base of ACP by indicating that

cognitive difficulties of young people suggest a potential barrier in communication during

the process of ACPfYP. There is also a greater understanding that this misperception of

ACPfYP is extended to parents/carers involved in the process.

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In agreement with other research (such as Martin and Beringer, 2019), evidence from the

case studies suggest that misperceptions of ACPfYP can result in diverse expectations and

experiences of the process. Previous similar research has highlighted unrealistic

expectations of patients and relatives during the ACP process (Lotz et al., 2013; Scott et al.,

2013; Mitchell and Dale, 2015). Some participants in the study reported that these variances

in expectations could occasionally be affected by different factors, such as the use of a

medical discourse by HCPs during ACPfYP discussions. The suggestion is that these variances

in expectation might also create barriers to the engagement of young people in their own

care planning. Some of the barriers around expectations have previously been thought to

extend to HCPs (Durall, 2012; Horridge, 2014), although there was no evidence from the

study’s findings to support this. On the contrary, HCPs were confident in their

understanding of ACPfYP and agreed with non-professional participants in its aims. Previous

research also identified HCPs’ lack of confidence when discussing ACP, and the resulting

misunderstanding of options and terminology surrounding the process (Porensky and

Carpenter, 2008; Wiener et al., 2012; van der Steen et al., 2016). Participants in the case

studies reported that these barriers still exist, and so the knowledge-base around ACPfYP is

now broadened to reveal that they are present in ACPfYP as well as ACP for adults.

However, the more experienced HCPs were very clear about their understanding of ACP,

which indicated that the barriers to engaging young people may also be related to clarity of

communication and the perception of a hierarchy in relationships.

Lydia (Parent) described communication as an evolving process which depended on the

quality of relationships during ACPfYP. Rachel (Parent) felt that the quality of relationships,

and the communication within them, was contingent on the degree of trust different people

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had for each other within the process of ACPfYP. The reported ambiguity of ACPfYP was not

as apparent between HCPs as among non-professionals, which suggests confusion around

terminology may originate in communication and relationships between HCPs and their

ensuing communication and developing relationships with other participants in the ACPfYP

process. Similar hierarchies in relationships have been related to organisational structure

and perceived responsibility in the care management process (Munyisia et al., 2011).

Participants across the case studies reported mixed experiences of communication, which

frequently revolved around the clarity of communication. ACP is essentially a

communication process (Van den Block, 2019), and there was consensus among participants

that communication within the process of ACPfYP needs to be open, honest, sensitive, and

empathetic. Participants across the case studies also reported these qualities in

communication represented a clear facilitator to engaging young people and their families

in ACPfYP. This finding concurred with previous research (Marie Curie, 2016; Jack et al.,

2018a). However, the present study indicates some participants perceived an occasional use

of medicalised terminology and also felt that broken relationships with other people in the

ACP process blurred their understanding of ACPfYP. Therefore a potential barrier to

engaging young people in their own care planning was apparent. The perception of these

relationships, and their impact, will now be considered as part of this synthesis.

8.8.2 HIERARCHIES OF POWER IN RELATIONSHIPS

Previous research has indicated that hierarchies in relationships may benefit ACP by

allowing different people to specialise in different areas of responsibility (Robinson et al.,

2013). Although there was a consensus among participants in the current study that

consultants should lead ACPfYP, evidence from the case studies also suggests relationships

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within, and views of, ACPfYP could sometimes be complicated by hierarchies of power.

Participants in the case studies of Bartholomew and Miriam reported that these hierarchies

could exist between young people and their families, and HCPs. Participants reported these

hierarchies might be influenced by perceptions of knowledge and experience of the

diagnosed conditions of young people and informed by a perceived use of medicalised

language within a discourse of power.

Similar hierarchies were also apparent between HCPs with different quantities of experience

and expertise in Peter’s case study. HCPs in the case studies of Peter and Miriam also spoke

about perceptions of similar hierarchies between HCPs, which may have been characterised

by the professional experience of HCPs and particularly their experience of ACPfYP.

Therefore, HCPs considered lower down in an organisational hierarchy may be privy to less

information and support compared to HCPs considered to be higher up in an organisation

(Munyisia et al., 2011). Participants felt that these hierarchical relationships sometimes

impacted on the effectiveness of communication and therefore complicated opportunities

for joint planning of ACPfYP.

Rachel (Parent) felt the disjointed nature of professional relationships contributed to the

already sensitive nature of relationships within ACPfYP. Consequently, Rachel (Parent)

believed a combination of the hierarchies of power in Miriam’s ACP contributed to the

miscommunication of the aims of ACP and the ultimate breakdown of relationships between

her and previous HCPs involved in the care planning of Miriam (Young Person). Developing

relationships prior to initiating ACPfYP appeared to reduce occasions of miscommunication,

misperception of the process, and decisional conflict (Chiarchiaro et al., 2015). This study

suggests that these findings in ACP for adults are also applicable to ACPfYP. However, the

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study does not support the view that the conflict is caused by a disagreement between

people about the goals of ACP (Tsai, 2009).

Participants in the case studies of Bartholomew and Peter believed that barriers caused by

relationships could be exacerbated by geographical boundaries between HCPs, which it was

felt had created an obstacle to professional working relationships. In this sense, the study

supports previous research that relationship-building is effective for improving

communication between different groups in ACPfYP and can facilitate young people in the

process (Fraser et al., 2010).

Barriers to the engagement of young people were created by poor communication as

highlighted in previous research (for example, Neuberger et al., 2013; Parliamentary and

Health Service Ombudsman, 2015; The Scottish Government, 2016; Compassion in Dying,

2018). Evidence from the case studies suggests these barriers are equally present in ACPfYP.

Most HCPs across the case studies did not report such hierarchies or miscommunications

between professionals and non-professionals in the process of ACPfYP. The exception was

when Ruth (Consultant Paediatrician) reported her perceptions of professional hierarchies

when she was first involved in Peter’s ACP. Ruth (Consultant Paediatrician) suggested this

imbalance of relationships negatively impacted on communication and the joint planning

opportunities in ACPfYP. Awareness that professional hierarchies in ACPfYP could create a

barrier for both case management and opportunities for co-ordinated care may help to

reduce potential barriers to engaging young people in the process.

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Previous research suggested some detachment from emotional decision-making processes

is necessary for HCPs (Lammers and Stapel, 2011). This information is significant because

language and terminology can help with this detachment (Lammers and Stapel, 2011).

However, too great a detachment was interpreted by some participants as a disregard for

the patient, as in Miriam’s case study. Rachel (Parent) perceived this objectivity as creating a

barrier to her engagement in Miriam’s ACP, and so led to her disempowerment. A greater

awareness of the perception of hierarchies of power in relationships could help improve the

health literacy of people currently feeling excluded from the process of ACPfYP. Low health

literacy of patients has been identified as a potential barrier to engaging people in their ACP

because of a resulting low level of autonomy in the process (Hayhoe et al., 2011).

Understanding the implicit hierarchies in place during ACPfYP, due to differences in role,

knowledge, and experiences of individuals in the process, is important to reduce the impact

of perceived hierarchies in relationships. Participants also suggested that awareness of

these steps by everyone involved in ACPfYP can impact on communication and facilitate the

engagement of young people, parents/carers, and HCPs in a more collaborative way. This

approach can help improve patient experience by providing opportunities for shared

decision making and joint planning (Freytag and Rauscher, 2017). Evidence from the study

supported previous research in identifying that establishing relationships prior to initiating

ACPfYP could go some way to redressing this issue (Jack et al., 2018a). Participants also

suggested these hierarchies may be reduced by greater access to training and education for

HCPs, which can improve both effective communication and working relationships within

ACPfYP (NHS Education for Scotland, 2011).

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There was unanimous agreement between participants about the importance of

personalised language during the joint planning of ACPfYP. Language which is both

developmentally- and age-appropriate can facilitate the engagement of young people in

their own care planning process and reduce fears and anxieties of everyone involved (Sahler

et al., 2000; Wiener et al., 2008). Participants reported that more personalised language can

help engage young people and reduce the barriers to their engagement in their own care

planning. Accessible language may also help empower young people by facilitating their

engagement in their own ACP (Marie Curie, 2016; Sinclair et al., 2016). In agreement with

previous research (Bernacki and Block, 2014), participants in the current study reported that

identifying triggers in conversation may also facilitate discussions around ACPfYP and can be

useful to engage young people in the process. Similarly, participants indicated clear written

information can be a valuable method of support for young people, their parents/carers,

and inexperienced HCPs. These findings concur with previous studies which identified that

high-quality communication is a necessary prerequisite for delivering goal-concordant care

for patients and that patients and their families wish to be included in decision-making

processes (Sanders et al., 2018). Although the quality of EoLC for young people is improving

(Martin and Beringer, 2019), the engagement of adult patients in their own ACP can still be

characterised by communication barriers and poor relationships with HCPs (Krause et al.,

2011; Dening et al., 2019). It is now understood that these barriers can be created by

perceptions of hierarchies in relationships, and also exist in ACPfYP. Participants in the study

reported that ACPfYP may be initiated, and young people can be better engaged, when

perceived hierarchies of power are reduced, medicalised language is avoided, and

collaborative relationships between different people in the process are allowed to develop.

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Findings from the case studies concurred with previous research, which highlighted the

dynamics of the implementation process of ACPfYP as a potential barrier to engagement

(Lund et al., 2015). A greater emphasis on advanced communication skills to convey the

meaning and expectations of ACPfYP may help to redress this imbalance and make ACPfYP

more accessible for young people. National guidelines (NICE 2016) defined new standards

for EoLC, which may help clarify the planning and management of care for young people

with LLCs. Yet the exclusion of patients with LTCs, may still present an additional challenge

because of prognostic uncertainty (Martin and Beringer, 2019). HCPs may perceive patient

and family member factors, such as acceptance of prognosis, as the most significant barriers

to goals-of-care discussions (Howard, 2018). Opportunities for HCPs to attend training are

thought be associated with improved communication skills and professional competencies

(Kirchhoff et al., 2012; De Vleminck, et al. 2014; Together for Short Lives, 2015). However,

HCPs from the case studies reported disparate opportunities to attend relevant education

and training, which suggests a further potential barrier to highlight the relational and

communicational aspect to engaging young people. This finding will now be discussed in

relation to flexible and innovative organisational structures and cultures.

8.8.3 FLEXIBLE AND INNOVATIVE ORGANISATIONAL STRUCTURES AND CULTURES

The structure and culture of the healthcare system can inform how far it is able to meet

personal preferences and values (Klingler et al., 2016). For example, a common and

consistent approach to language and terminology across an organisation can help

communication and reduce relationship conflicts (The Scottish Government, 2015).

Furthermore, an innovative approach to ACP, which fosters a responsive and ethical

environment, can help to provide patient-centred care which is receptive to planning needs

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and individual preferences, and supports informed choices (Hammes et al., 2011).

Participants in the case studies shared their views and experiences of perceived challenges

created by organisational structures and cultures during the process of ACPfYP.

Organisations which developed models of care based on the funding of services or an

expectation of a rigid process ACPfYP were reported to negatively impact the effectiveness

of ACPfYP. This model, in turn, was felt to create a barrier to the engagement of young

people in the process, and devalue both young people and their parents/carers.

Professionals need training to discuss care options with patients (Together for Short Lives,

2015a). Yet HCPs have previously reported training is variable in quality (Seymour et al.,

2010). Some participants in the case studies, such as James (Parent), viewed the financial,

structural, and working culture of organisations as taking precedence over the needs of

young people. Some HCPs in the case studies of Bartholomew, Peter and Miriam also

reported limited opportunities to attend training courses and a resulting reliance on peer

support. Therefore, ACPfYP presents a challenge created by organisational factors in the

initiation and implementation of ACPfYP (Lund et al., 2015). A purely financial focus is

incompatible with a patient-centred approach to ACPfYP and the engagement of young

people in the process (Klingler et al., 2016). Furthermore, a rigid organisational structure,

which lacks opportunity for flexibility and innovation, may create additional challenges to

providing continuity of care and co-ordination of services (Martin and Beringer, 2019).

Participants felt organisations willing to adopt a more flexible and innovative approach to

ACPfYP, built on a model of multi-professional integrated care, allowed HCPs to provide a

more person-centred and individualised process in which to engage young people.

Participants also believed that providing additional funding for local 24-hour care and

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ensuring a smooth transition to adult care can facilitate the timing of ACP discussions for

young people. This forward-thinking and creative approach to delivering healthcare is

thought to have a positive impact on communication, patient-centred care, and reduce

costs of delivery (Sinuff, 2015).

Training and education opportunities can revolve around developing communication skills

and passing on the knowledge of more experienced HCPs (NHS Education for Scotland,

2011; Marie Curie, 2016). The General Medical Council (GMC) guidance, the Ambitions for

Palliative and End of Life Care Framework, and the High Level Guidance4 emphasised the

importance of ensuring all staff can care with confidence, competence and compassion

(Compassion in Dying, 2018). Yet despite an abundance of available resources and training

opportunities for HCPs (Compassion in Dying, 2018), some caution is needed when assuming

that it is affordable and accessible for all HCPs involved in ACPfYP. The options outlined in

existing legislation and guidance were not reported by all HCPs in the case studies and was

reportedly less so for the least experienced HCPs. Experienced HCPs in the case studies

believed training and education was affordable, accessible, and potentially provided by

themselves. These views were contrasted by those of less experienced HCPs, who spoke

about training courses which were too expensive, too frequently focused on a specific LLC

such as cancer, and took place at locations too far to travel to easily. HCPs who could not

access relevant training and education reportedly relied on peer support, but this risked

being involved in ACPfYP with reduced confidence, knowledge, and skills (De Vleminck et al.,

2016). Therefore, the trickle-down effect of communication from the most experienced and 4 GMC Guidance - Treatment and care towards the end of life: good practice and decision-making. General Medical Council, 2010, paragraphs 88 and 89; Ambitions for Palliative and End of Life Care: A national framework for local action 2015 – 2020, National Palliative and End of Life Care Partnership, 2015; High level guidance to support a shared view of quality in general practice, Regulation of General Practice Programme Board, 2018

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knowledgeable to the least was not always evident in the case studies, and was often

associated with a lack of self-assurance in HCPs (Travers and Taylor, 2016). An organisational

structure and culture which promotes flexibility and innovation, with increased funding,

opportunities for training and provision of out-of-hours care, could develop greater

confidence in HCPs to initiate ACPfYP discussions with young people and their family.

8.8.4 SUMMARY OF SYNTHESIS

When discussing the complex picture of ACPfYP, participants suggested that perceptions of

communication and relationships directly impacted on the views and experiences of the

care planning process. These factors were underpinned by views of training and education

for HCPs and by the reported structure and culture of the organisation in which they work.

Participants felt that receptive and embracing attitudes to ACPfYP can help create positive

experiences of a person-centred process, with clarity of communication and understanding

of the process on all sides to engage young people in their ACP. Alternatively, apparent

hierarchies of power and potential dislocation of both communication and relationships can

lead to misperception of expectations of ACPfYP, resulting in barriers to engaging young

people and negative experiences of ACPfYP.

8.9 CHAPTER SUMMARY

This chapter has presented a discussion of the study’s findings of the views and experiences

of ACPfYP from the interviews of young people, their parents/carers, and HCPs. Adopting a

qualitative case study approach for this study provided the opportunity to explore the views

and experiences of all participant groups across the case studies, and identify what they

reported as key factors which impacted on the engagement of young people in their own

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ACP. The three themes identified from the synthesis of the findings have been outlined and

compared with the literature where possible.

Findings confirmed some significant differences in the views and understanding of ACPfYP

between young people, parents/carers, and HCPs. These differences were sometimes

represented in participants’ misperception of terms. Despite cognitive difficulties of young

people, participants felt a clearer understanding of ACP could be achieved by improving

communication skills. There was a consensus ACPfYP should aim to plan to meet the future

wishes of young people, or their parents/carers when young people were not able to

express their opinions. The data in this study agreed with previous research and existing

guidance that young people’s engagement in their ACP could be facilitated if ACPfYP is

initiated by a consultant by the time the young person is in their mid-teens and their

condition is stable. Participants reported that ACPfYP may provide more immediate comfort

because of the forward planning of future care, and this should be particularly apparent

when the condition of young people deteriorates. Yet case studies suggested poor

communication and unnecessary tensions in relationships can sometimes create barrier to

engagement. Participants also felt communication in the ACPfYP process can occasionally be

characterised by a discourse of medicalisation of language within a hierarchy of power.

While a medical aspect to ACPfYP is important to ensure care of young people in the event

of future deterioration, some participants gave the impression that too great an emphasis

on a medical discourse may create a barrier to the engagement of young people by shifting

the power balance in relationships towards HCPs.

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There was a general desire from participants in the study to engage young people in ACPfYP

discussions where possible. The feeling in interviews was that there now needs to be

greater support of young people and their parents/carers to facilitate this engagement.

Participants across the case studies shared that there also needs to be improved access and

more affordable training for HCPs, which provides opportunities such as mentoring. An

open, flexible, and innovative organisational culture could help provide an ACP process

which is more responsive to engage young people. Some participants reported that financial

constraints, and a focus on care being co-ordinated at central geographical locations, may

currently act as a barrier to engagement.

Chapter 9, will present a personal reflective discussion of the data collection process.

CHAPTER 9 – REFLECTIVE CHAPTER9.1 CHAPTER INTRODUCTION

The previous chapter presented the discussion of the findings following thematic analysis

and CDA of the data. This chapter is my personal reflections from the PhD journey.

Reflection helps situate the researcher within the study, and improve both the rigour of the

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study and identify the learning of the researcher (Glaze, 2002; Yin, 2009; Thomas, 2011).

Reflection can also aid transparency in the research process and its use. Keeping a reflective

diary is an accepted practice in qualitative research which is approached from an

interpretivist perspective (Ortlipp, 2008). When conducting a research study, various

potential methods to aid reflection include diaries, field notes written during or after

interviews, videos, and photographs (Mckernan, 1996). Field notes can help make sense of

different processes and provide context to interviews (Welsh and Dehler, 2004; Dickson-

Swift, 2007). Accordingly, field notes were employed to help the reflection process during

this study because they were used in similar previous research, and more notably in

previous qualitative research focused on ACP (Crocker et al., 2015; Woods et al., 2015;

Beecham et al., 2016).

Reflections were recorded in a personal diary (see Appendix 22 for two extracts from my

reflective diary) and supplemented by field notes which were kept in addition to the diary

during the data collection stage. A personal diary provided an opportunity to reflect on

different aspects of the study, and space to record thoughts and processes to enhance

analysis.

To aid the reader, the chapter first situates the researcher to help contextualise the

reflective process. The reflection is divided into two main sections: a reflection on the study

process, and a reflection on the impact of the study on personal development.

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9.2 SITUATING THE RESEARCHER

My interest in the research topic arose in part from being a parent. I began my PhD when

my son was at primary school, and I was interested in his engagement in any future care

decisions if he was diagnosed with a serious illness. Furthermore, teaching death, dying,

bereavement, and end-of-life care since 2009 added to my interest in the topic area.

Throughout all interviews, it was important to have a clear understanding about the

boundaries as a researcher. Recognising the need to balance the role as a researcher with a

personal interest in ACPfYP was important to maintain objectivity throughout the study, and

collect reliable data. Acknowledging a boundary also helped reduce the potential for

emotional burden on the researcher (Dickson-Swift, 2006). Judging the boundary was aided

by my experiencing in teaching and additional voluntary work with victims of crime. I did not

feel overwhelmed or emotionally exhausted by the research and this was facilitated by

emotionally distancing myself from the research topic during the research process (Dickson-

Swift, 2006).

I was aware that my position as a parent might have inadvertently influenced the nature of

the interviews by steering the topic towards the care and opinions of young people. I was

keen to ensure the views and experiences of young people were at the centre of this study,

and they were explored within the context of ACPfYP. I was aware of the insider-outsider

debate (see Chapter 4), and further value was added to this study by recognising the

contribution of a parent’s view, and a non-clinical judgement to the analysis and discussion.

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I was also conscious some participants might share personal information which could

include self-disclosure or unresolved issues requiring therapeutic intervention (Dickson-

Swift, 2006, 2007). My preparation for interviewing participants, as described below (section

9.3.2, page 299), ensured interviews did not become a therapy session for participants to

seek information or guidance about their child’s condition or the ACPfYP process (Dickson-

Swift, 2006). No interviewees contacted me post-interview and I do not know if any felt the

need to access any support. There were no issues raised during the interviews which

required me to access any additional support.

9.3 REFLECTION ON THE STUDY PROCESS

The biggest challenges, and the greatest opportunities for personal development, during my

PhD journey were encountered during the recruitment of participants and the collection of

data. Both stages provided insight into the research journey and important decision-making

processes, and will be discussed in turn below.

9.3.1 RECRUITMENT OF PARTICIPANTS

The willingness of clinical colleagues to engage in the recruitment stage of the study, and

the initial support they offered to identify potential participants, suggested that recruitment

would be relatively straightforward. Clinical colleagues at the original research sites for the

study identified 24 potential participants and if only a handful of these had agreed to take

part, the target sample number of cases would have been reached quite early on in the

study.

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Being new to research I expected that clinical colleagues would actively identify potential

participants as this is what they had agreed to do. In reality, staff at the research sites were

probably overworked and overstretched. Staff fed back they were too busy to dedicate time

to recruit participants, and sickness absence also impacted on the availability of staff to

check patient lists and actively find young people who met the recruitment criteria. I

contacted the research sites on a regular basis but telephone calls and emails were not

always returned. There were also some changes at different sites where staff

reorganisations resulted in there being at least three different clinical leads at one site

during the first year of the study. As a result, participant recruitment stalled and I had to

rethink the study within the rigorous framework of case study methodology, and submit

amendments to redesign my approach to recruiting participants. Based on feedback from

clinical sites about the availability of young people, the upper age range of participants was

increased from 19 years to 24 years using the MeSH definition of a young person. I

increased the number of recruitment sites and took a proactive approach to promote the

study across a wider geographical region within the UK. I learnt to take a greater initiative to

find participants, and asked clinical leads if I could attend clinical team meetings and support

groups for parents/carers or young people to promote my study. I was invited to clinical

team meetings but was informed that support groups did not exist for parents/carers and

young people. Social media was also utilised to promote the study, and interest was gained

from different countries around the world.

This period of the study provided an opportunity to make new contacts and promote the

study to a wider audience than it would originally have reached. I also learnt about decision-

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making processes, and how better-informed decisions to promote the study and reach

potential participants could have been made earlier in the recruitment process.

9.3.2 DATA COLLECTION

Preparation for interviewing participants included attending relevant training, watching

videos, and practicing interview styles to develop my use of language and anticipate

potential problems during interviews. Dr Katherine Knighting, my Director of Studies, is an

experienced interviewer with clinical participants and has research experience with young

people with complex healthcare needs. She accompanied me for three initial interviews to

offer advice about interview technique and provide an opportunity to debrief after each

interview. The preparation process gave me confidence to conduct interviews and develop

interview skills.

9.3.2.1 Interviews of participants

Initial interviews with young people were more difficult than expected due to their limited

cognitive and verbal abilities. I had explained the study to one of the young people a few

weeks before interviewing him and over-estimated his cognitive and verbal abilities. This

made me feel awkward because I had not fully considered these limitations beforehand. My

errors informed future interviews, and I realised the importance of being careful about my

use of language in future interviews to ensure explanations were clear and questions were

asked in a way participants could understand.

Interviews with parents/carers were a little easier than those with young people. I felt more

relaxed and had greater awareness of my interviewing technique. Errors made during initial

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interviews of young people, such as repetition of questions, and asking leading questions,

were also avoided.

The format of the joint interview schedule for parents and carers made me consider

whether it was better split into two separate interview schedules. A separation of interview

schedules would ensure that parents would be asked questions which were relevant to

parenting and family issues, and professional carers would be asked questions which were

more relevant to professional caring duties. Therefore, richer data could be collected and

the interview experience of participants could be improved. I took advice from the research

supervisory team and reflected independently on the merits of whether the interview

schedules should be combined or separated. After careful consideration I felt separating the

single interview schedule would better fit the distinct population groups in future

interviews. This decision also provided an opportunity to gain experience of ethical

processes to gain approval for an amendment to the interview schedules.

As outlined in the Method Chapter (Chapter 5, pages 109-100 and 115-116), telephone

interviews were an important strategy to contact HCPs because of their workload and

potentially irregular working patterns. I anticipated interviewing HCPs would be more

difficult than conducting interviews with other participants because the method of

interviewing removed the opportunity for reading body language and so impacted on the

cultivation of relationships and rapport during interviews (Novick, 2008). Conversely,

telephone interviews can be positive because reduced face-to-face contact can positively

impact emotional distress by providing comfort through means of virtual communication

(Mealer and Jones, 2014).

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The relationship with one HCP was difficult to build during a telephone interview because

she appeared reluctant to elaborate on her responses despite the attempts to ask probing

questions and reword the questions. Conversely, one face-to-face interview was

characterised by the HCP’s nervousness, which was evident by her lack of eye contact and

frequent hesitations. Another face-to-face interview with a HCP was initially very formal.

The beginning of the interview was quite regimented, which allowed the HCP to dominate

its early stages. As the interview progressed, our relationship relaxed, conversation flowed

more freely, and language became more informal as trust developed between us. These

interviews acted as a prompt to put participants at their ease throughout the interview, and

facilitate an atmosphere in the interview to help participants share their experiences of

ACPfYP. I designed strategies, such as engaging participants in general conversation before

starting the interview questions, to help generate a more relaxed atmosphere. The

interview schedule was used to record additional field notes about the interview to inform

future interviews.

Creating a naturally-relaxed atmosphere for interviews was more awkward with two

participants I met previously in the early stages of my PhD, and I was aware our existing

relationship might impact on the quality of the interview and richness of the data. The

impact of these pre-existing relationship was minimised by developing interview skills prior

to the data collection stage, acknowledging potential challenges posed by prior knowledge

of the participant and research site, and recognising opportunities for me to access post-

interview support (McConnell-Henry et al., 2014). A calm and relaxed nature, and speaking

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in a naturally gentle tone during interviews, also helped create an environment conducive

for interviewing.

The location of interviews was also something to consider when arranging interviews. When

conducting two face-to-face interviews with HCPs, room availability at their place of work

was limited, and there was not an opportunity to prepare the room prior to the interviews.

A nearby heater was noticeable on the audio recording, which made some transcription

more difficult than necessary. However, information provided by the HCPs, such as the

initiation of ACPfYP and the developing relationships with the family, corroborated

information provided by other participants in the case study. Therefore, this problem did

not impact on the quality of the data collected, but provided an opportunity to consider the

location of future interviews.

In contrast, two parents invited me into their homes and offered me a choice of a hot or

cold drink before the interview began. One parent also introduced me to her child after the

interview. Both parents seemed relaxed during their interview; one interview was

conducted in the kitchen: the parent stood throughout the interview, and smoked a

cigarette while she melted chocolate in a saucepan. A relaxed home environment allowed

the parent to control the timing and content of interactions, and so facilitated the

storytelling element of qualitative research (Sivell et al., 2019). However, the pre-occupation

of the parent was a prompt for me to consider the location of future interviews. In contrast,

the home-based interview with the other parent was conducted in the living room, and this

offered a more focused, and less distracting, environment.

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Overall, the data collection stage of the study taught me when and how to make decisions.

The ethical significance of minor amendments to the study design, and who to consult as

part of those amendments, increased respect for individuals as part of those decision-

making processes (Su, 2010). I have more awareness of the timing of decisions, such as

when the strategy for participant recruitment needed to be amended. I am also mindful

about who to include in the decision-making process, and that clinical leads need to be

consulted as well as my supervisory team. I now appreciate the time it takes to undertake

research, and the factors which can contribute to delays in participant recruitment and data

collection. The PhD study has given me an appreciation of the need to be prepared for

interviews, and the importance of creating an atmosphere to put people at their ease.

Conducting interviews helped develop key interviewing skills, such as not being afraid to

pause and think about which questions to ask. Recognising and acting on these point helped

avoid similar errors in subsequent interviews and contributed to the collection of rich data.

9.4 REFLECTION ON THE IMPACT OF THE STUDY ON PERSONAL DEVELOPMENT

Reflecting on my personal development as part of my PhD journey helped recognise that

not all development is purely academic (Glaze, 2002; Benson et al., 2010). This section

outlines my personal development as part of the PhD journey.

Designing and implementing a research study gave me a good understanding of the nature

of qualitative research and of the cyclical, sometimes messy, nature of the research process

(Bloyce, 2004). I have learnt people and research concepts do not fit neatly into categories,

and research can sometimes be frustrating; at other times, it is immensely rewarding and

exciting. At the beginning of the research journey I was not experienced enough to

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understand the true nature of research and potential delays at different stages of the

process. Therefore, I learnt about the importance of decision-making processes and

problem-solving during the research process (Ortlipp, 2008). Knowledge of the research

process helped ensure transparency and rigour during the study (Glaze, 2002; Ortlipp,

2008). Understanding the research process was supported by a clear training programme to

support my research needs both during and after completing the study (see Appendix 24).

My professional practice has been honed by the ethics approvals process for different

research sites, the necessity to keep accurate records, and the need to protect research

participants. Personal resilience was also developed by finding solutions to challenges

around recruitment and location of interviews. This personal and professional growth was

aided by the use of reflection (Yin, 2014). The PhD journey has provided the opportunity to

consider the significance of the healthcare system, and the impact my study can have (Baker

and Lattuca, 2010). Understanding the integration of different aspects of the healthcare

system, and the challenges and facilitators to providing care, has deepened my appreciation

for HCPs and their work. Interviews with participants, and HCPs in particular, signalled the

importance of the study because they identified the shortage of previous research into the

views and experiences of young people, their parents/carers, and HCPs of ACPfYP.

My ability to explain, explore and detail information have improved, which has further

advanced my academic writing. The PhD journey has improved my teaching, and the

feedback I provide to students, because my critical analysis has been developed. I have also

reflected on the impression I give of myself to other people and the language I use to

discuss sensitive issues to ensure power is balanced in relationships. Furthermore, I have

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considered how people are valued in different areas of life, such as healthcare processes,

politics and social policy, which has further informed teaching of these topics by recognising

inequalities, dominance and power dynamics in different parts of the population.

The field work was a very interesting part of the research process, although it was

sometimes tiring because of the concentration involved when interviewing. I was honoured

that participants felt able to share such personal and sensitive information.

Working towards the completion of the thesis took longer than originally anticipated, and

my ability to write and structure the thesis coherently seemed to frequently desert me. I

realised that the key to completing the thesis was perseverance and good time

management. In addition, I realised the importance of keeping the full thesis and research

questions in focus when writing the different chapters helped avoid getting side-tracked.

9.5 CHAPTER SUMMARY

Reflection on my PhD journey, the time invested in undertaking the study, and the decision-

making processes it involved, helped me understand that every aspect of the study provided

different but challenging experiences. I have learnt what a PhD entails, and developed a

solution-focused approach, and foresight of processes and the challenges they could bring. I

have developed my skills in designing, adapting and implementing a rigorous research

design, while maintaining ethical rigour.

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Each participant has particular significance for me and I have learnt something from every

interview I conducted. Despite the challenges I faced and the peaks and troughs of this

study, I came to the realisation that I truly enjoyed this process.

Chapter 10 is the final chapter of the thesis. This concluding chapter will provide a summary

of the whole thesis, research findings and how a new understanding of the views and

experiences of ACPfYP contribute to the growing body of knowledge around young people

and ACP. The chapter will explore the impact the research may have on future policy and

practice and how the research will be disseminated. Recommendations for future research

will also be identified.

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CHAPTER 10 – CONCLUSION AND RECOMMENDATIONS10.1 CHAPTER INTRODUCTION

This final chapter summarises the whole thesis by presenting a new understanding of

ACPfYP through the views and experiences of young people, their parents/carers, and HCPs.

The chapter will outline the contribution of this study to professional practice and policy.

The strengths and limitations of the research, and the unique and significant contribution of

this study to existing knowledge will be stated. Recommendations for future research will

also be presented. A summary of the chapter will provide a conclusion to the thesis.

10.2 RESEARCH CONTRIBUTION TO ADVANCE CARE PLANNING FOR YOUNG PEOPLE (ACPFYP)

The amount of research conducted into ACPfYP has increased significantly since 2010 (see

Chapter 3, page 52). Along with the work of organisations like Together for Short Lives,

there is a gradual focusing of attention on to ACPfYP and the importance of engaging young

in their own care planning process. This study adds a further dimension to the ambition to

inform policy and professional practice to improve the provision of palliative care for young

people.

Findings from this study found that ACPfYP should aim to improve the care of young people,

and in agreement with previous research, indicated that different participant groups within

the ACPfYP process have a different understanding of how ACPfYP should achieve this and

whether it should focus on a medical approach to care (Billings and Holdsworth, 2013;

Mullick et al., 2013; Russell, 2014). A more holistic approach to ACPfYP may help resolve

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these misunderstandings and focus future professional practice (The Gold Standard

Framework, 2010; Rietjens et al., 2016).

As a consequence of this finding about the misunderstanding of ACPfYP, the experiences of

ACPfYP were mixed for participants across the case studies. This study agreed with previous

research when recognising the value of ACPfYP discussions being started before patients

enter the EoL phase of life, and promoting the importance of person-centred care (Care

Quality Commission, 2016b, 2018). When exploring the timing of implementation of ACPfYP,

new evidence was presented to suggest that young people should be aged around their

mid-teenage years when ACPfYP is initiated. This finding has significant implications for

professional practice and policy because of the impact on communication and other factors

associated with ACPfYP. Initiating ACPfYP early in a young person’s condition can help

facilitate the engagement of young people in their own care planning (Liberman et al.,

2016).

Findings from this study agreed with previous research that ACPfYP was frequently initiated

by a consultant (Billings, 2013). A significant contribution of this study to professional

practice is that initiation of ACPfYP by this HCP facilitates the engagement of young people

and parents/carers. Any HCP in the multi-professional team should be able to identify

triggers to initiate ACPfYP but the relationship between the consultant and parents/carers

should be developed prior to initiation.

This study indicated that communication with young people needs to be both age- and

developmentally appropriate (Lotz et al., 2015; Zadeh et al., 2015; Hughes et al., 2018). A

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unique and significant contribution of this study is the understanding for the potential for a

power discourse within the communication and relationships of those involved in ACPfYP. A

power discourse was present in several interviews with participants, and was also evident in

some ACPfYP discussions and documentation. This finding is important for professional

practice because a power discourse can create a barrier to the engagement of young people

in ACPfYP.

These findings can have a significant impact on the organisational structure, and the

availability, and access to training, for HCPs. A new and significant contribution to policy and

practice from this study is that training and education for HCPs is not always accessible and

affordable, which is in contrast to some previous research (Billings and Holdsworth, 2013;

Sanderson and Woolfe, 2014; Yotani et al., 2017). Training courses are sometimes too

expensive, and too far away, for HCPs to attend, and this is amplified if HCPs are working in

non-statutory organisations. This study discovered that HCPs more experienced in ACPfYP

felt training and education were available and accessible, but less experienced HCPs relied

on peer support and their initiative to source support. Building a knowledge-base around

ACPfYP was difficult if initial training was not attended. A shortage of accessible and

affordable training for HCPs has sometimes meant that young people and their

parents/carers are not provided with enough information about ACPfYP, which can create a

barrier to their engagement in the process.

There has been a negative impact on the commissioning of palliative care services for young

people in the UK, which is further reflected in the funding and organisational structure for

this population. These findings are significant for professional practice because some HCPs

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recognised that organisations structured on providing local, and flexible, services can

facilitate the engagement of young people and their parents/carers. This finding is also

significant for policy because new models of organisational structure can only be developed

if sustainable financial resources are made available (Together for Short Lives, 2015a; Care

Quality Commission, 2016a).

With these points in mind, the research proposition of this study (page 98) has been met:

the views and experiences of young people, their parents/carers, and HCPs, are dependent

on the timing of the implementation of ACPfYP, and the degree to which the barriers and

facilitators hinder or help the engagement of young people in the advance care planning

process.

10.3 RECOMMENDATIONS FOR POLICY AND PRACTICE

The recommendations made from the study have been explored and summarised under

two sub-sections below: recommendations for policy, and recommendations for practice.

10.3.1 RECOMMENDATIONS FOR POLICY

Knowledge of policies and guidelines was identified as a barrier to engaging young people in

ACPfYP, however the policies and guidelines themselves were always conducive to

facilitating their engagement. The following recommendations are suggested as

considerations when initiating and using ACPfYP.

1. Organisations would benefit from a flexible and innovative structure in order to

provide a patient-centred ACPfYP process which can engage young people wherever

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possible. The structure and working cultures of organisations should be flexible and

innovative to reflect a patient-centred ACPfYP process and engage young people in the

process.

2. To meet the personalised needs and wishes of young people, families require locally-

arranged care and access to out-of-hours care.

3. It would be beneficial for young people and their families for funding to be made

available to create an environment to enable young people to be at the centre of the

process of ACPfYP and conducive to facilitate their engagement in the process.

10.3.2 RECOMMENDATIONS FOR PRACTICE

It is advisable that changes to practice would not, and should not, be made based upon the

findings of one study. However the suggestions below are aspects for consideration when

initiating and using ACPfYP.

1. Young people would benefit from engaging in the process of ACP to give them value,

purpose, and the opportunity to contribute to planning their future.

2. Organisations should consider developing advanced communication skills of HCPs to

help reduce instances of misperception of ACPfYP and ambiguity of terms.

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3. To engage young people in their own care planning, it would be beneficial if

communication is personalised and both age- and developmentally-appropriate,

utilising communication aids, information, and support where necessary.

4. HCPs should consider the clarity of their communication to help everyone in ACPfYP

understand and engage in the process. It would be beneficial to young people and

their families for communication to be open, honest, and, where possible, devoid of

medical terminology.

5. It would be beneficial to young people if ACPfYP is initiated and led by a key consultant

who has an established relationship with the young person and their family, although

any HCP can identify triggers in communication or behaviour to identify opportunities

to initiate ACPfYP discussions.

6. Young people and their families would benefit from a process of ACPfYP which is

personalised, but organisations should consider initiating ACPfYP by the time young

people reach their mid-teenage years and when their condition is stable.

7. Young people would benefit from HCPs fully documenting ACPfYP, using a structured

tool or format, and sharing the document with key professionals and the family prior

to young people’s transition to adult services.

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8. HCPs should consider the potential influence of hierarchies of power in the process of

ACPfYP, which may be a barrier to engaging young people and other HCPs in the

process.

9. HCPs would benefit from training which is affordable and accessible to reflect the

desire to maximise the engagement of young people, inform both young people and

their parents/carers about ACPfYP, and support them through the process.

10.4 RECOMMENDATIONS FOR FURTHER RESEARCH

This section provides suggestions for further research. The study has identified important

findings related to ACPfYP, and undertaking this research has provided an opportunity to

consider new gaps in research. Findings suggest that further research would be beneficial in

the following areas:

1. Research to ascertain how many young people with complex healthcare needs in the

UK have an ACP. For example, a simple audit across all relevant organisations in

primary, secondary, and tertiary care, and the third sector, could be completed to

identify the extent of data being routinely recorded and the prevalence of ACPfYP.

2. Research to explore reasons why ACPfYP is not being initiated. For example, local or

national research in organisations or services where gaps are identified, or research

to identify where ACPfYP might be beneficial but has not been initiated. This

research might include further study into the barriers and facilitators of initiating

ACPfYP.

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3. Collaborative research with HCPs and organisations to evaluate training ACPfYP

opportunities for HCPs. This research could identify the availability, cost, and take up

of ACPfYP training for HCPs, and gather impact on knowledge, confidence and ability

to initiate and implement ACPfYP.

4. A research study to trial and evaluate training for HCPs, which might include the

introduction of a shadowing programme or a mentoring scheme. The training would

allow experienced HCPs to pass knowledge and understanding of ACPfYP to less

experienced colleagues, and recognise triggers in communication to help identify

opportunities to initiate ACPfYP.

5. Collaborative research with young people and to develop and evaluate information

and support mechanisms to facilitate the engagement of young people in ACPfYP.

This could include leaflets, websites, apps, or face-to-face support to ensure young

people feel able to engage in ACPfYP and have answers to common questions.

6. A research study to trial and evaluate which HCPs are involved in ACPfYP and

whether additional HCPs, as part of a multi-professional team, would facilitate the

engagement of young people. For example, a trial to explore the inclusion of

different therapists in an ACPfYP team would inform the impact of difficult

conversations and the support needs of young people.

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10.5 UNIQUE AND SIGNIFICANT CONTRIBUTION TO METHODOLOGY AND KNOWLEDGE

This study presents different significant and unique contributions to both methodology and

knowledge, which will be set out in turn below.

10.5.1 UNIQUE AND SIGNIFICANT CONTRIBUTIONS TO METHODOLOGY

The unique and significant contributions this study has made to methodology are outlined

below:

1. This research is the first to utilise case study methodology to explore ACPfYP, and by

doing so has put young people at the centre of the ACPfYP process. Previous

research has included the views of young people in care planning decisions, but

young people have not been central to this research before.

2. The research is the first known study which presents an understanding of three

participant groups concurrently in ACPfYP. Previous studies have focused on a

maximum of two participant groups and there is no research which brings together

all perspectives of ACPfYP. This was identified as a gap in knowledge from the

literature search and this study goes some way to filling this gap.

3. Furthermore, CDA had not been used previously to explore the power relationship in

ACPfYP. CDA helps bring an additional layer of analysis to understand ACPfYP and

consider new aspects of the process. Therefore, this study presents a unique view of

how ACPfYP works in practice by highlighting some of the dynamics in both

relationships and communication.

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10.5.2 UNIQUE AND SIGNIFICANT CONTRIBUTIONS TO KNOWLEDGE

1. The study has revealed for the first time that a misperception of ACP can result in

both diverse expectations and experiences of ACPfYP and create a barrier to

engaging young people in their own care planning.

2. This is the first study to identify ACPfYP has the potential to highlight hierarchies of

power in different relationships in the process of ACPfYP. These relationships were

perceived to be characterised by a discourse of power, which was thought to create

a barrier to engaging young people and less experienced professionals in the process

of ACPfYP.

3. A unique finding of this study is that ACPfYP is not as prevalent as some HCPs

believed it to be. The recruitment stage of the study indicated an overestimation of

the number of young people with an ACP in place and the assumption that young

people have an ACP in place prior to transition. This study has helped raise

awareness of the prevalence of ACPfYP and the engagement of young people in the

process.

4. This is the first known study to identify the optimal timing of ACPfYP to be by the

time young people are in their mid-teens, their condition is stable, and ideally before

transition to adult care.

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5. This study has provided new knowledge about the advocacy role of parents/carers

within ACPfYP, particularly for young people with cognitive difficulties, and how they

can be a pivotal part of the process.

This study has added to previous research by helping raise awareness of the prevalence of

ACPfYP and the engagement of young people in the process. Understanding the role of HCPs

has helped recognise important aspects of current practice and where future practice can

be informed. Most importantly, the engagement of young people in ACPfYP is now better

understood. Identifying the facilitators and barriers to their engagement can benefit the

future use of ACPfYP to ensure HCPs, parents/carers, and young people are able to work

together to facilitate young people’s engagement in the process.

10.6 STRENGTHS AND LIMITATIONS OF THE STUDY

The strength of a research study lies in its design, transparency, and recognition of aspects

that could have been improved (Creswell, 1994; Tuval-Mashiach, 2017). Recognising the

strengths and weaknesses of any research improves both its transparency and rigour

(Creswell, 1998; Tuval-Mashiach, 2017). The consolidated criteria for reporting qualitative

research (COREQ) checklist will be used to help identify the strengths and limitations of the

study, and so increase the transparency, rigour and comprehensiveness of this section (Tong

et al., 2007).

The first strength was that I had undertaken relevant training for my research, and attended

sessions run by experienced researchers at Edge Hill University on research design,

methodologies, different methods, and data analysis (see Appendix 24). This training

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programme ensured the study followed an appropriate research design of the required

breadth and depth to meet the requirements of a PhD (Tong et al., 2007).

A second strength was the rigorous research design, which clearly set out methodological

theory to underpin the research, and the chosen approach to participant selection and data

collection (Tong v, 2007). The research design is important in case study methodology

because careful design will increase confidence in the robustness of the study and provide

greater opportunities for generalising results (Yin, 2014).

The use of semi-structured interviews as part of the qualitative approach allowed flexibility

in the data collection stage of the research. Interviews were digitally audio recorded, and

field notes were written during and after interviews to aid personal reflection and help

inform subsequent interviews (Tong et al., 2007). Themes were derived from the data, and

supported by quotations, to provide consistency and clarity of findings (Tong et al., 2007).

These strategies helped increase the transparency of the study and reliability of the findings

(Yin, 2014). Additionally, following a clear protocol for the study built trust in the findings

due to strong internal validity and increased opportunities for generalisability of findings

(Yin, 2014).

A strength of the study was to gather information on the process, and experience, of ACPfYP

from the perspectives of all involved to make an original contribution to the evidence base.

Identifying the barriers and facilitators to engaging young people was a crucial aspect of the

study because it brought together the views and experiences of the three participant groups

concurrently, which had not previously been reported. Recognising the optimal timing of

322

ACPfYP discussions was also an important objective to identify how ACPfYP currently works,

and fill the gap in knowledge which was identified in existing literature (see Chapter 2, page

25, and Chapter 3, page 51).

The research was valuable as it provided opportunities for young people, parents/carers,

and HCPs to share their experiences. The decision to use case study method allowed

provided a greater opportunity to generalise results. The range of participants also helped

provide a greater depth of understanding of ACPfYP: the ages of young people ranged from

fourteen to twenty-three; two of the young people were non-verbal or non-communicative;

the parents/carers were represented by two mothers, a father, a grandparent, and a

professional carer; and there was a range of different HCPs: consultants (n=6), a clinical

manager, and a nurse.

My position as the researcher also benefitted the study. As an outsider, I brought an

innocent naivety to the interviews because I do not have a clinical background and did not

have knowledge of research sites, or the majority of the participants, before beginning the

study. As a parent, I was in a strong position to maximise opportunities to understand

participants during interviews because I had an interest in understanding and engaging

young people in decisions that matter to them. This standpoint helped bring a fresh

perspective to ACPfYP. Keeping a reflective diary also helped to record, reflect, and develop

the interview process as an early career researcher. Consequently, there is now a much

better understanding of ACPfYP from multiple perspectives.

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A further strength has been my PhD journey because there is now a greater and deeper

sense of my own understanding of research and personal development. This resulted in a

detailed individual development plan to address research training needs (see Appendix 25),

and preparation for post-doctoral employment.

Potential limitations of the research include my position as an outsider. Although this

standpoint is a strength because it brings a position of objectivity and neutrality, the

absence of prior knowledge of ACPfYP and clinical procedures could have restricted my

understanding of medical conditions, processes and experiences which are important to

appreciate the ACPfYP process.

A further limitation is that young people, parents/carers, and HCPs may not experience

events the same way. Therefore, data analysis may have represented a personal bias as

there are multiple ways to analyse and explain data in complex processes (Porter, 2007). For

example, one young person may not experience events in the same way as another young

person, or a HCP might view the process of ACPfYP differently from another HCP in the same

case study. The potential for bias and inaccurate analysis was minimised by adopting a

multiple case study design to bring together different views within the same case study.

Data, and the analysis of it, was also shared and corroborated with the research supervision

team as part of the transparent study design. However, repeat interviews and participant

checking of findings was not undertaken due to the sensitive nature of discussions, and

potential deterioration in condition of the young people involved in the study (Tong et al.,

2007).

324

Finally, a greater triangulation of data by examining more completed ACPfYP documentation

would have strengthened the research findings (Yin, 1999). The opportunity was minimised

because most of the contact with HCPs was limited to emails and telephone conversations,

and ACPfYP documentation is confidential to the patient and the HCP/organisation where it

is documented. Therefore, the chance to look at completed documentation is something to

consider for future, similar research.

10.7 RESEARCH DISSEMINATION

Dissemination is necessary to allow others to be aware that research has been undertaken

(Edwards, 2015). This study has meant undertaking research to make a different in the real

world, and I believe this has already been partially achieved by disseminating key aspects of

the study on social media and at conferences.

As the research focus of the study developed from a local focus in the North-West of

England to a study which gained interest from around the world, Comments, Likes, and

Retweets on Twitter came from a variety of countries: the UK, the US, Canada, Australia,

New Zealand, Sweden, South Africa, Spain, Belgium, Lebanon, Ireland, Italy, Germany and

the Netherlands. The extensive interest in the study on social media suggests a potential for

informing the engagement of young people in ACPfYP in different countries around the

world. The impact of the study on Twitter, as at March 2019, is summarised in Table 7:

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Table 7 - The impact of the study on Twitter

Date

Activity Number of

likes

Number of

Retweets

Number of

impressions5

Number of

engagements6

January and

February 2018

Tweets to promote the study 35 66 16,488 371

May 2018A Tweet to promote a narrative

review paper from the study when

published online (Palliative Medicine)

50 16 5,569 225

July 2018Palliative Medicine Tweet to promote

the narrative review paper

34 25 5,771 228

July 2018

A Tweet to promote the narrative

review paper from the study when

published in Palliative Medicine

34 6 2,163 77

Total 153 113 29,991 901

The article published in Palliative Medicine has also been downloaded over 450 times and is in the top 5% of all research outputs on Twitter

as scored by Almetric, which tracks research outputs on multiple websites and research platforms (c).

5 An impression is defined by Twitter as the number of times people have seen a Tweet on Twitter (Twitter, 2018).6 An engagement is defined by Twitter as the number of times people interacted with a Tweet (Twitter, 2018)

326

10.7.1 PUBLICATION TO AID DISSEMINATION OF FINDINGS

The literature review on which Chapter 3 of this thesis is based, was published by Palliative

Medicine in 2018 (Hughes et al. , 2018). ResearchGate statistics indicate the article had been

read 142 times since its online publication in May 2018, and I was subsequently invited to

take part in a Twitter Journal Club in June 2018 to discuss the article and its implications for

practice; Twitter impressions reached 35-135 per Tweet, which further indicates the impact

of the research. I also presented the findings from my study at two national conferences in

September 2018 (Appendix 23); I was invited to present at one of the conferences.

The research informed practice during the data collection phase of the study. Two HCPs said

that discussing ACPfYP made them reflect on their professional practice, and indicated they

would review their approach to ACPfYP: one HCP said specific instances of ACPfYP would be

taken to team meetings to discuss current practice and how to initiate ACPfYP earlier in the

young people’s condition; another HCP said the interview had provided an opportunity to

reflect on professional practice and she would consider changing her approach to ACPfYP as

a result. Two parents said they found talking about their child’s ACP made them think about

the process in a way they had not previously considered. Furthermore, two research sites

indicated that the study prompted them to initiate service reviews to ascertain how many

young people in their services have ACPfYP in place.


This study has focused on the views and experiences of young people, their parents/carers,

and HCPs, of ACPfYP. The contribution to policy and practice has been identified, and the

strengths and limitations of the study have been recognised. This research offers significant

327

and unique contributions to knowledge due to the use of case study methodology to gain an

in-depth understanding of ACPfYP (Yin, 2009) and by exploring the perspectives of all

participant groups concurrently with ACPfYP. The study has also contributed to developing a

greater understanding of ACPfYP by employing CDA as an additional method of analysis.

Recommendations for policy and practice have been made, along with recommendations

for further research, which will build the evidence base and provide additional guidance to

inform future policy and practice. The research has already encouraged HCPs and some

organisations to consider their processes and procedures around ACPfYP. This was indicated

both by interest in my published article, and the responses of some participants and

research sites during the course of the study.

328

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Appendix 1 12 key points to guide ACP discussions

1. Life changing event, e.g. the death of spouse or close friend or relative 2. Following a new diagnosis of life limiting condition e.g. cancer or motor neurone

disease3. Significant shift in treatment focus e.g. chronic renal failure where options for

treatment require review4. Assessment of the individual’s needs 5. Multiple hospital admissions 6. ACP is voluntary and should not be initiated simply as part of routine record keeping

or care7. The care provider may respond to ‘cues’ which indicate a desire to make specific

wishes known e.g. worries about who will care for them8. ACP should not be initiated as a result of outside pressure e.g. family wishes or

organisational pressures9. The care provider will require appropriate communication skills10. The care provider should have full knowledge of the person’s medical condition,

treatment options and social situation11. There may be someone more appropriate to carry out this discussion e.g. specialist

nurse 12. The time and setting should be appropriate for a private discussion

(Henry & Seymour 2008: 5)

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Appendix 2Characteristics of included studies table

Study details Aims and objectives

Study design Participant characteristics

Country Setting Key findings Theme(s) of included papers

Included/excluded

(Assessment Framework

score for included studies)

Keeping all options open: Parents’ approaches to advance care planning (Beecham, 2016)

To investigate how parents of children and young people with LLCs approach and experience ACP

Open ended, semi- structured interviews

(i) Parents whose child was currently receiving services from the palliative care team (n=28)

(ii) Bereaved parents whose child had received care from the palliative care team and had died 6- 10 months previously (n=29)

A child population aged

UK Unidentified specialist palliative care service

Most decisions were made relatively late in the child’s illness

It is questionable whether the parents in our study would have welcomed earlier discussions

Parents need more support and more information about the aims of ACP to help make decisions

ACP in practice How young people

are engaged in ACP discussions

Relationships The dynamics in

relationships between young people and their parents

Highlighted the importance of a trusting relationship in the ACP process

Included

The focus of the study is about engaging parents as well as young people in ACP

Hawker et al. framework score: (30/36)

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0-19 years with a diverse range of life- limiting conditions, ethnic and socio- economic backgrounds.

Was there a plan? End-of-life care for children with life-limiting conditions: a review of multi-service healthcare records (Beringer, 2012)

To compare documented EoL planning with published children’s palliative care standards, across a range of children’s healthcare services and to assess the impact on practice of written guidelines to support EoL care planning

A manual retrospective review of healthcare records

Children with a diagnosed LLC or LTC, who had died before the age of 18 years, between October 2008 and March 2010, within a defined geographical area served by one or more of the participating services

(n=114 records relating to 48 children; 24 boys and 24 girls)

A range of LLCs

UK Unspecified services in the West of England

Documented EoL planning varies between services

Professionals can help prepare staff to engage families in these conversations

ACP in practice Varies between

services

Training/education Failures in ACP

may be related to the need for additional training and access to documentation

Relationships HCPs have an

important role to play in ACP discussions

Included

The focus of the study is about engaging young people in the ACP process


Service evaluation of an advance

Investigate how accurately the

Mixed methods

ACP document analysis from 3 research sites

UK Children’s services in East Kent

Inconsistent structure and formatting of

ACP in practice Issues around the

format of

Included

Focus is on

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care plan tool (Billings, 2013)

documenta-tion was being completed

Ascertain the appropriaten-ess of the tool from the family and staff perspective

Discover the extent to which families were able to agree care at the end of life, including resuscitation decisions

Identify staff perceptions of training received regarding application of the tool

Identify and build on the strengths, and

Parents (n=4) from 2 research sites

Focus groups with unspecified professionals and lead nurses (n=17)

No information about the breakdown of gender, ethnicity or socio-economic groups

ACP documentation, leading to ambiguity in their use

HCP knowledge of the young people and the ACP process is important

There needs to be a state of awareness and readiness for the ACP process to engage parents

ACPs may be inappropriate in some circumstances e.g. conflict with religious beliefs

ACP can be positive if used proactively, is family-driven and is introduced in

documentation Timing of ACP

needs to be considered

Young people should be involved in ACP discussions

Communication Barriers to families

wanting to engage

Training/education Current training

not always consistent

Relationships Some tension in

relationships

engagement of families rather than the engagement of young people


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make recommendation for improvement

the home environment

Timing of ACP is important e.g. not when the young person’s condition is unstable

Including the Perspective of the Adolescent in Palliative Care Preferences (Christenson, 2010)

To present issues and challenges that HCPs encounter and to describe how communication can be facilitated between the patient, family and HCPs

Case study The case is an 18-year-old woman diagnosed with cystic fibrosis as an infant. Her disease progression has resulted in more frequent and longer hospitalisations

US Children’s Mercy Hospitals and Clinics in Kansas City, Missouri

Communication tools: Can facilitate

young people’s perceptions, beliefs, values, preferences and goals, as well the success of available coping mechanism

Can help initiate difficult conversations

May initiate thinking about personal and health care goals

ACP in practice How ACP works for

the young person in the study

Communication Can help

understand young people and the care they need

Can help young people develop skills to convey their own care treatment decisions

Included

Discusses the engagement of young people within the family context


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Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV (Dallas, 2016)

To determine the appropriate-ness of engaging adolescents with chronic or life-limiting illnesses in advance care planning

Randomised control trial

Young people aged 14-21 years

Participants were aware of their HIV diagnosis; a documented IQ score <70; no documented diagnosis of severe depression, suicidal/homicidal ideation or psychosis; and able to understand English

US 6 unspecified US urban hospitals with high AIDS rates

Family-centred ACP enabled worthwhile conversations, while simultaneously eliciting intense emotions

Evidence of the feasibility, acceptability, and safety of ACPfYP

ACP in practice Families want to

hear their own child’s voice

Resilience of young people in ACP discussions

Communication FaCE enabled high

quality EoL conversations between families and their teens

Included

Identifies attitudes of young people to ACP


Advance care planning and place of death in a paediatric palliative care unit in France (de Broca, 2016)

To compare two periods to evaluate the impact of ACPs

Identify the challenges and benefits of developing advance care plans with the families of paediatric patients

Retrospective study

No specific information provided

The article was a general discussion of the experiences of the authors at their paediatric palliative care unit

France Paediatric palliative care unit

Advance care planning is crucial to involve families of paediatric patients in decision- making and help them understand that they can have their say in what happens to their child in the final phase

ACP in practice Starting ACP

discussions early is beneficial

Communication ACP discussions

can be difficult but are beneficial

Relationships Potential for

conflict

Included

Includes the role of young people within the family context in the ACP process

Hawker et al.

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framework score: (21/36)

Barriers to Conducting Advance Care Discussions for Children With Life-Threatening Conditions (Durall, 2012)

To identify barriers to conducting advance care discussions for children with LTCs

Survey Physicians (n=107) and nurses (n=159). Participants included all ICU and oncology attending physicians, fellows, hospitalists, nurses, and advance practice nurses.

US The medical/ surgical ICU, medicine ICU, cardiac ICU (CICU), and oncology ward at Children’s Hospital Boston; and the outpatient oncology service at the Dana-Farber Cancer Institute

Clinicians perceive parent prognostic understanding and attitudes as the most common barriers to conducting advance care discussions.

Educational interventions aimed at improving clinician knowledge, attitudes, and skills in addressing these barriers may help HCPs overcome perceived barriers.

Communication New resuscitation

order will be developed to communicate overall goals of care

Training/education HCPs’ ability to

discuss EoLC with families is a barrier to engagement in ACP

Included

Although the focus of the study was HCPs, the research identified the impact of their knowledge and skills on the process of ACPfYP


The Importance of Inter-

Explores triadic inter-generational

An online survey, covering

Undergraduate students (n=567) comprising men

US Surveys were completed online

The need to treat advance care planning as

Communication Effective

communication

Included

This study is

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generational Communication in Advance Care Planning: Generational Relationships among Perceptions and Beliefs (Freytag, 2017)

perceptions of family members’ beliefs and behaviours that often impact an individual’s willingness to engage in advance care planning

openness about death; death anxiety; perceived knowledge about surrogate decision-making; and ACP self-efficacy

(n=173) and women (n=394)

Aged 18-88

The majority of participants in the project were white (n=426), followed by Hispanic (n=39) and Asian (n=28). African Americans and those who identified as Middle Eastern each comprised 10 participants.

The majority of respondents identified as Catholic (n=179) or Protestant (n=234); nondenominational Christian (n=64) and no religion (n=44). The remainder of participants identified as

a family communication issue

should be targeted for effective ACP

Relationships Importance of

effective family relationships and negotiating conflict

A family-centred approach might encourage people to engage in ACP

about family engagement in the ACP process and includes the perspective of young people


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Jewish, Hindu, Mormon, Muslim, and Buddhist

An Exploratory Survey of End-of-Life Attitudes, Beliefs, and Experiences of Adolescents With HIV/AIDS and Their Families (Garvie, 2012)

To examine congruence in HIV positive adolescents and their families’ thoughts about death and dying.

Survey administered within a randomised control trial

Medically stable, English-speaking adolescents aged 14-21 years with HIV/AIDS and their families (n=48)

Adolescent participants: female (n=15) and male (n=9)

Family participants: female (n=19) and male (n=5)

Black/African American (n=41) and only 3 participants (all family members) were educated to university level. Nearly half of the participants

US Children’s National Medical Center and St. Jude Children’s Research Hospital, Michigan, Washington

The timing of EoL conversations and adolescents’ EOL needs and wishes are not known by their families.

Families need help initiating EoL conversations to assure that their adolescents’ EOL wishes are known to them

Communication Needs to be

improved with young people

Included

This study includes the engagement of young people and their inclusion of their wishes in their EoL decisions.


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(n=21) did not have any qualifications.

Nearly half of the family groups (n=10 out of 24) identified themselves as living at or below the federal poverty level

Advance Care Planning:Challenges and Approaches for Paediatricians (Heckford, 2014)

To review advance care planning for children with life-threatening or life-limiting conditions (LTLLCs) in our local area

Retrospect-ive case note review

Young people aged 0-18 years (n=20) who were diagnosed with a LLC or LTC

Died between October 2008 and March 2010, which was caused by the progressive disease/underlying diagnosis (n=11) or respiratory problems (n=7)

UK Two NHS Trusts in Bristol

The numbers of children living with LCCs or LTCs are estimated to be higher than previously thought

Advancing technologies can sustain life in ways that were previously impossible

The best interests of the child should be at the forefront

ACP in practice Varying standards

of ACP

Communication Using prompts can

help initiate conversations about ACP

Communication skills are key

Included

This study is about family engagement in the ACP process and includes the engagement of young people


365

of the EoL decision-making process

There are clear benefits of ACP

Adolescent End of Life Preferences and Congruence With Their Parents’ Preferences: Results of a Survey of Adolescents With Cancer (Jacobs, 2015)

To examine baseline congruence between the self-reported needs of adolescents with cancer for EoLC and their families’ perception of those needs

To better understand how adolescents with cancer approach EoL issues

Practitioners’ experiences with the study and their thoughts

Survey English-speaking, age 14–21 years, and were diagnosed with cancer (n=17) and their family member (n=17)

Mean age of the adolescents was 16 years (range 14–21; 12 patients (71%) were less than 18); 63% were male, and 58% were African–American

US Adolescents and families in the intervention arm of the FAmily CEntered Advance Care Planning (ACP) for Teens with Cancer (FACE- TC) study

Adolescents with cancer were comfortable discussing EoL, and the majority preferred to talk about EoL issues before they are facing EoL

Important facets of adolescents’ EoL wishes were not known by their families, reinforcing the importance of eliciting individual preferences and engaging dyads so parents can understand their children’s wishes

ACP in practice Need improved

information about hospice services

Not always congruence the family about location of death

Training/education

Improved communication between HCPs and families

Included

Identifies that young people can/should be engaged with planning their own care


366

regarding EOL care for themselves and their patients

Pediatric Advance Care Planning: A Systematic Review (Lotz, 2013)

To assess current practices, effects, and perspectives of pACP

Systematic review

5 qualitative and 8 quantitative studies. Only 3 pACP programs were identified, all from the United States

Participants ranged in age from 2 months to 37 years old

US A range of settings:

Inpatient/ outpatient and/or clinic (n=5)ICU (n=1)School (n=1)Unspecified (n=4)

There are few systematic pACP programs worldwide and none in Europe

Future research should investigate the needs of all stakeholders, particularly HCPs

ACP in practice Reluctance to

engage in ACP discussions if the prognosis was poor

Included

Review included attitudes of young people in the EoL/ACP process


Pediatric advance care planning from the perspective of health care professionals: A qualitative interview study (Lotz, 2015)

To investigate attitudes and needs of HCPs with regard to pACP

To investigate attitudes, barriers, and benefits as well as requirements

Qualitative interview study

17 HCPs (physicians: n=9; nurses: n=6; socialprofessionals n=2) representing a range of paediatric disciplines

An average age

Germ-any

Hospital care (n=7)

Outpatient care (n=8)

Care facility (n=4)

Some participants were

There is a need for paediatric ACP

There are several barriers to its implementation

ACP in practice Problems related

to ACP are about HCP discomfort and uncertainty

Potential barriers and facilitators to ACP are identified

Evidence from adult ACP may help to inform the development of

Included

Identified the engagement of young people from HCPs’ point of view

Hawker et al.

367

for pACP from the view of HCPs

of 46 years and an average of 21 years’ experience

Male (n=6); female (n=11)

working in more than one care setting in Munich and surrounding areas

ACPfYP

Training/education Focus for HCPs’

training is identified

framework score: (33/36)

A randomized clinical trial of adolescents with HIV/ AIDS: pediatric advance care planning (Lyon, 2017)

To determine if paediatric advance care planning (pACP) increases adolescent/ family congruence in end-of-life (EOL) treatment preferences longitudinally

Randomised clinical trial

Adolescents aged 14–21 years with HIV/AIDS and their families (n=105 dyads).

Adolescents- Male (n=29); female (n=25)Age range=14-20 years; mean age=18 years;Black African-American (n=50); Hispanic/Latino/ non-African (n=4).No qualifications from high school (n=29)At or below the federal poverty line (n=28)

US 6 unspecified paediatric hospital-based HIV clinics, located in high mortality urban areas in the Southern US

A structured pACP intervention was effective in:

Increasing congruence in EOL treatment preferences between adolescents and their families

Engaging adolescents/ families to begin these conversations early and to continue these conversations over time

Demonstrating safety e.g. such

ACP in practice ACP is more

effective when intervention is targeted

Targeted ACP positively influenced relationships and communication

Included

Review included attitudes of young people in the EoL/ACP process


368

One-third had an AIDS diagnosis.

topics as using a seat belt and having a smoke detector in the home

A Longitudinal, Randomized, Controlled Trial of Advance Care Planning for Teens With Cancer: Anxiety, Depression, Quality of Life, Advance Directives, Spirituality (Lyon, 2014)

To test the feasibility, acceptability and safety of a paediatric advance care planning intervention

Randomised controlled trial

Adolescent (age 14-21 years)/family dyads (n=30) with a cancer diagnosis

Young people: Male (n=18), female (n=12); Race: Asian (n=2); Black (n=13); White (n=15)A range of diagnoses: Leukaemia (n=14); Lymphoma (n=2); solid tumour (n=6); brain tumour (n=8)The majority (n=24) had no educational qualifications

US Unidentified large urban children’s hospital in-patient unit, outpatient clinic and patients’ home

Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability.

Courageous adolescents willingly participated in highly structured, in-depth paediatric advance care planning conversations safely

ACP in practice Structured ACP can

improve participation in the ACP process and communication; and reduce stress and anxiety

Included

Study discusses ACPfYP with the target age group


369

Family members: Male (n=2), female (n=28)Race: Asian (n=1); Black (n=13); White (n=13); declined (n=1)No high school diploma or were in high school (n=24)

An income >300% federal poverty line (n=14),with only 4 families reporting an income equal to or below the federal poverty line

Family-Centered Advance Care Planning for Teens With Cancer (Lyon, 2013)

To examine the efficacy of family-centred ACP

Randomised control trial

Young people (n=30) aged 14 to 21 years with cancer and their surrogates or families (n=30)

Young people:Male (n=18);

US Children’s National Medical Center, Washington DC

ACP enabled families to understand and honour their adolescents’ wishes.

Intervention dyads were

ACP in practice A structured ACP

process can improve communication and engagement of young people and empower them

Included

Study discusses ACPfYP with the target age group. The inclusion of

370

female (n=12)Race: Asian (n=2); Black (n=13); White (n=15)Condition:Leukaemia (n=14); Lymphoma (n=2); Solid tumour (n=6); Brain tumour (n=8)Education:No high school diploma or were in high school (n=24)

Families/ surrogates:Male (n=2); female (n=28)Race: Asian (n=1); Black (n=13); White (n=15); declined (n=1)Had at least some education to college/higher education level (n=24)

more likely than controls to limit treatments.

Underserved African American families were willing to participate

Communication A structured ACP

process can improve clinicians’ communication

A structured process can help engagement of young people and allow them to express their wishes

Relationships A structured

process provides a potential for avoiding conflict

young people’s wishes is also part of the study.


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An income >300% federal poverty line (n=14), with only 4 families reporting an income equal to or below the federal poverty line

What Do Adolescents Want? An Exploratory Study Regarding End-of-Life Decision-making (Lyon, 2004)

To explore whether differences exist between chronically ill and healthy adolescents with regard to their attitudes about EoL issues

Focus group with young people aged >18 and interviews with HCPs

Focus group and interviews helped develop a 25-item survey, which was then used to gather the views of young people

Unspecified HCPs

Young people:Healthy:Aged 14-21 (n=25)Male (n=6); female (n=19)Ethnicity: African-American (n=25); Caucasian; Hispanic

Chronically ill Aged 13-21 (n=25)Male (n=9); female (n=16)Ethnicity: African-American

US Children’s National Medical Center, Washington DC

Teens without a chronic illness have thought about EoL issues and have opinions similar to those of chronically ill teens.

Most healthy and chronically ill adolescents do want to be involved in shared decision-making.

The EoL decision-making process should

ACP in practice Palliative care

should be integrated from the time of diagnosis

Participating in the ACP process gives young people some control over what happens to them

Reliance on guidelines and recommendations to overcome barriers

Communication Tension

surrounding the

Included

Study discusses ACPfYP with the target age group. The inclusion of young people’s wishes is also part of the study


372

(n=19); Caucasian (n=3); Hispanic (n=3)

be individualised communication and timing of communication about ACP

Development, Feasibility, and Acceptability of the Family/ Adolescent-Centered (FACE)Advance Care Planning Intervention for Adolescents with HIV (Lyon, 2009)

To develop, adapt, and ensure feasibility, acceptability, and safety of the Family/ Adolescent-Centered (FACE) Advance Care Planning intervention

Two-group, randomised, controlled trial

Young people:Aged 14-21 (n=38)Male (n=15); female (n=23)Race/Ethnicity:Black/African American (n=35); White/Caucasian (n=2); American Indian/Alaskan (n=1)

The majority of participants (n=22) had no high school diploma or were in high school (n=22)

The majority of participants (n=35) were in permanent housing.

There was a spread of

US Two unspecified hospital-based outpatient clinics inWashington, D.C. and Memphis, Tennessee

Existing ACP models can be adapted for age, disease, and culture.

Young people with HIV/AIDS were satisfied with an ACP approach that facilitated discussion about their EoL wishes with their families.

Families acknowledged a LTC and were willing to initiate EoL conversations when their children were medically stable

ACP in practice A structured

process is more effective at engaging the target population

Communication Positive

contribution of conversations about EoLC

Relationships Potential conflict

between young people and family members

Included

Study discusses ACPfYP with the target age group. The inclusion of young people’s wishes is also part of the study


373

different income levels

The majority (n=32) were heterosexual

The majority (n=36) were single

Engaging College Undergraduates in Advance Care Planning (Sanders, 2017)

To examine the reactions of college students following the completion of their advance care plans and then sharing these plans with friends and family

1. Students received a 90-min lecture on the importance of ACP

2. Students participated in facilitated discussion around completing their ACP

3. Students were asked to present their ACP to key

3rd and 4th year undergraduate students

US An unspecified large Midwestern university

Students reported that while completing their ACPs created many emotions, they found the experience to be valuable and facilitated conversations with family and friends about end-of-life care that may not have occurred otherwise

ACP in practice Self-protective

disengagement from some students

Worry, fear and anxiety

Positive growth (empowerment)

ACPs can foster effective communication

Training/Education Educators have a

key role in starting discussions with young people about their ACP

Relationships Choosing the right

Included

The study includes the views of young people who match my criteria. It also explores how their views can be incorpora-ted into their own ACP alongside their family’s views

374

family members and friends

4. Students were asked to write a 5-page reflection paper on the experience of completing their ACP

family member to be their decision-maker


How I Wish to be Remembered:The Use of an Advance Care Planning Document in Adolescent and Young Adult Populations (Wiener, 2008)

To explore whether adolescents and young adults living with a LLC find it acceptable and helpful to have a planning document to share their wishes and thoughts regarding EOL

Survey 20 study participants


Age range:16-19 years (n=9)20-28 years (n=11)

Race:Caucasian (n=10)African American (n=8)

US National Cancer Institute, Pediatric Oncology Branch

Maryland

ACP may be appropriate and helpful for young people living with a serious illness.

Future research should further validate the preferences identified by participants and explore whether an age-

ACP in practice Young people may

be less concerned with legalities and medical decision-making than treatment, memories and those they leave behind

Communication ACP may foster

communication within the family

Included

Discussion about the importance of including young people in their own ACP

Hawker et al. framework score:

375

care. If so, to learn about specific concerns adolescents and young adults feel are important to include in such a document.

Hispanic (n=2)

Diagnosis:Cancer (n=10)HIV (n=10)

appropriate document can improve communication with family and staff in EoL care

(29/36)

Allowing Adolescents and Young Adults to Plan Their End-of-Life Care (Wiener, 2012)

To assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young

Ranking exercise on My Thoughts, My Wishes, My Voice and, Five Wishes

Fifty-two participants living with metastatic or recurrent cancer (n=16) or HIV infection (n=26)

Aged 16-28 years

Male (46%); Female (54%)

Race:African American (44%)White (33%)Hispanic/Latino (14%)Asian/Pacific Islander (2%)Biracial (4%)

US Pediatric Oncology Branch of the National Cancer Institute and from Georgetown University Hospital

Seriously ill young people benefit from being involved in their EoL treatment and care plans.

An age-appropriate ACP can provide a sense of trust with the medical team, their family, and providing some measure of control and independence for the young person

ACP in practice It is important to

engage seriously ill young people in their ACP

A structured document allows greater engagement of the young people and potential for compassionate and self-directed care, support and comfort both before and after death

Relationships ACP can create a

sense of trust between young

Included

Identifies the importance of engaging young people in their ACP and suggests how young people can be engaged


376

adults (AYAs) living with a serious illness

Other (2%) Certain items are important in a specific document that allows compassionate and self-directed care, support, and comfort both before and after death.

Voicing choices allows young people to reflect on their life and to make choices about what nurtures, protects, and affirms their remaining life and how they wish to be remembered into the future

people, their family and the medical team

Differences between Pediatricians and Internists in Advance

To evaluate differences between paediatricians and internists

Self-reported question-aire

Paediatricians (n=227)


Japan Japanese board-certified haematolo-gists

Paediatricians were less likely than internists to discuss ACP and advance

ACP in practice Specialists more

likely than other HCPs to discuss ACP

Included

Discussion about the importance

377

Care Planning for Adolescents with Cancer (Yotani, Kizawa and Shintaku, 2017)

in the practice of and barriers to (ACP) for young people with cancer

Age: 47.6 ± 7.9

Various places of work:

Internists (n=373)

Male (n=293); females (n=80)

Age: 49.1 ± 9.2

directives with patients, and both paediatricians and internists tended to discuss ACP and advance directives more often with patients’ families

Barriers to ACP tabulated – specialists perceived more barriers than other HCPs

ACP usually discussed more with the family than young people

of including young people in their own ACP and the potential barriers and facilitators to engaging them


378

Appendix 3Hawker et al.'s (2002) assessment framework

Author and title: Date:

Good Fair Poor Very poor

Comment

1. Abstract and title2. Introduction and aims3. Method and data4. Sampling5. Data analysis6. Ethics and bias7. Findings/results8. Transferability/generalisability9. Implications

Total

379

Appendix 4Hawker et al.'s (2002) scoring system

1. Abstract and title: Did they provide a clear description of the study?

GoodFairPoorVery poor

Structured abstract with full information and clear titleAbstract with most of the informationInadequate abstractNo abstract

2. Introduction and aims: Was there a good background and clear statement of the aims of the research?

Good

Fair

Poor

Very poor

Full but concise background to discussion/study containing up-to- date literature review and highlighting gaps in knowledge

Clear statement of aim AND objectives including research questionsSome background and literature reviewResearch questions outlinedSome background but no aim/objectives/questions, OR Aims/objectives but

inadequate backgroundNo mention of aims/objectivesNo background or literature review

3. Method and data: Is the method appropriate and clearly explained?

Good

Fair

Poor

Very poor

Method is appropriate and described clearly (e.g., questionnaires included)Clear details of the data collection and recordingMethod appropriate, description could be betterData describedQuestionable whether method is appropriateMethod described inadequatelyLittle description of dataNo mention of method AND/OR Method inappropriate AND/OR No details of data.

4. Sampling: Was the sampling strategy appropriate to address the aims?

Good Details (age/gender/race/context) of who was studied and how they were recruited Why this group was targetedThe sample size was justified for the studyResponse rates shown and explained

380

Fair

PoorVery poor

Sample size justifiedMost information given, but some missingSampling mentioned but few descriptive detailsNo details of sample

5. Data analysis: Was the description of the data analysis sufficiently rigorous?

Good

Fair

PoorVery poor

Clear description of how analysis was doneQualitative studies: Description of how themes derived/respondent validation or

triangulationQuantitative studies: Reasons for tests selected hypothesis driven/numbers add

up/statistical significance discussedQualitative: Descriptive discussion of analysis. QuantitativeMinimal details about analysisNo discussion of analysis

6. Ethics and bias: Have ethical issues been addressed, and what has necessary ethical approval gained? Has the relationship between researchers and participants been adequately considered?

Good

FairPoorVery poor

Ethics: Where necessary issues of confidentiality, sensitivity, and consent were addressedBias: Researcher was reflexive and/or aware of own biasLip service was paid to above (i.e., these issues were acknowledged)Brief mention of issuesNo mention of issues

7. Results: Is there a clear statement of the findings?

Good

Fair

PoorVery poor

Findings explicit, easy to understand, and in logical progressionTables, if present, are explained in textResults relate directly to aimsSufficient data are presented to support findingsFindings mentioned but more explanation could be givenData presented relate directly to resultsFindings presented haphazardly, not explained, and do not progress logically from resultsFindings not mentioned or do not relate to aim

8. Transferability or generalizability: Are the findings of this study transferable (generalizable) to a wider population?

Good Context and setting of the study is described sufficiently to allow comparison with other contexts and settings, plus high score in Question 4 (sampling)

381

Fair

PoorVery poor

Some context and setting described, but more needed to replicate or compare the study with others, PLUS fair score or higher in Question 4

Minimal description of context/settingNo description of context/setting

9. Implications and usefulness: How important are these findings to policy and practice?

Good

FairPoorVery poor

Contributes something new and/or different in terms of understanding/insight or perspective

Suggests ideas for further researchSuggests implications for policy and/or practiceTwo of the above (state what is missing in comments)Only one of the aboveNone of the above

382

Appendix 5Summary of studies for literature review

Study author(s) and date of publication

Theme 1ACP in practice

Theme 2Communication

Theme 3Education/training

Theme 4Relationships

Beecham et al. (2016) √ √Beringer and Heckford (2012) √ √ √Billings and Holdsworth (2013) √ √ √ √Christenson et al. (2012) √ √Dallas et al. (2016) √ √De Broca et al. (2016) √ √ √Durall, Zurakowski and Wolfe (2012) √ √Freytag and Rauscher (2017) √ √Garvie et al. (2012) √Heckford and Beringer (2014) √ √Jacobs et al. (2015) √ √Lotz et al. (2015) √Lotz et al. (2013) √ √Lyon et al. (2017) √Lyon et al. (2014) √ √Lyon et al. (2013) √ √ √Lyon et al. (2004) √ √Lyon et al. (2009) √ √ √Sanders and Robinson (2017) √ √ √ √Wiener et al. (2008) √ √Wiener et al. (2012) √ √Yotani, Kizawa and Shintaku (2017) √

383

Appendix 6Demographic form

DEMOGRAPHIC FORM FOR IDENTIFICATION OF ELIGIBLE YOUNG PEOPLE FOR THE ACP EXPERIENCES PROJECT Using a separate form for each site, please answer the questions below and complete the table with details of the young people who fulfil the eligibility criteria for their parents/carers to be sent an invitation for the case study project. Please keep a separate record of the Project ID number you give on this form with the young person’s name in the event there are any queries about the case. If you wish to make any additional comments about any cases, please make them at the end of the form. If you have any questions when completing this form please contact Ben Hughes on 01695 654 354 or [email protected] 1. Name of person completing the form: …………………………………………………………………………… 2. Clinical Site: 3. Please state the number of young people receiving care at the above setting aged 13-24 years who have an advance care plan in place. ...................

4. If you have excluded young people for any other reason than the eligibility criteria, please say how many here……………….and briefly state why? ELIGIBILITY CRITERIA: AGE: Young person aged 13-24 years. MEDICAL CONDITION: They must be diagnosed with a life-limiting condition and they must have an advance care plan already in place.

ID Date of Birth Diagnosis Time known to Date initial ACP began Key Professionals involved in ACP

384

Number service implementation and/or on-going delivery & their employing NHS Trusts

Any additional comments on cases or completing this form.

385

Appendix 7 Invitation flyer

A multiple case study of the views and experiences of young people, their parents/carers and healthcare

professionals in the advance care planning (ACP) process.

An invitation to share your views and experiences of the advance care planning process for young people.

I am a PhD student from Edge Hill University and am conducting a study to explore the views and experiences of young people, their parents/carers and healthcare professionals of the advance care planning (ACP) process for young people. The study aims to provide new insights into the experience of creating and using an advance care plan and what is needed for best quality care. Why am I being invited? A healthcare professional involved in your child’s care has identified them as having an advance care plan and sent you this flyer on my behalf. What is involved if I take part? I am inviting parents/carers (age 18+ years), with a child aged 13-24 years old and with an ACP, to take part in short face-to-face interviews to share their views and experiences on the advance care planning process. Interviews will be held at a time convenient to you in your home or another suitable location of your choice. If your child is 13-24 years old and can communicate fluently in English or use other methods of communication with your support, I would also like to interview them about their experience. It is your choice whether you would like to invite your child to take part in the study. You can take part without inviting your child to be part of the study. If you would like to know more or are interested in taking part in my study, please contact me on (01695) 654 354 or email [email protected] and I will answer any questions you have and provide more information. Ben Hughes Research Supervisory Team: Dr Katherine Knighting, Professor Mary O’Brien, Dr Anita Flynn

386

Appendix 8Information pack letter

A multiple case study of the views and experiences of young people, their parents/carers and healthcare professionals in the

advance care planning (ACP) process.

Thank you for contacting me to tell me of your interest in taking part in my PhD project and for providing your contact details. Please find enclosed a participant information sheet for you and a relevant participant information sheet for the age of your child. The information sheets will explain more about the project and how you and your child can be involved. I hope that it will answer any questions you may have but please contact me by phone or email if you would like to discuss anything further. If you choose not to take part in the project after reading the information please let me know by email or phone. You do not need to provide a reason if you do not wish to. I will delete the personal information you provided for this pack to be sent out to you. You will not be contacted again using this information. All personal data received is currently stored securely on the university network and managed according to Data Protection legislation. If you wish to take part in the study please contact me so we can discuss the arrangements for the interview and whether or not you wish for your child to take part. I look forward to hearing from you. Thank you again for your time and interest in the project. Contact details Ben Hughes (01695) 654 354 or email [email protected] Kind Regards,

Ben Research Supervisory Team: Dr Katherine Knighting, Professor Mary O’Brien, Dr Anita Flynn

Appendix 9

387

Example Participant Information Sheet (PIS for young people aged 13-15)

PARTICIPANT INFORMATION SHEET for Young People (13-15 years)

A multiple case study of the views and experiences of young people, their parents/carers and healthcare professionals in the advance care planning (ACP) process.

Names of Project Team: Ben Hughes, Katherine Knighting, Mary O’Brien and Anita Flynn.

You are being invited to take part in a study which is interested in hearing from young people, their parents/carers and healthcare professionals about the advance care planning process. Before you decide whether or not to take part, you need to know why we are doing this study and what will happen. This sheet will tell you all about it so you can talk with your parent/carer and decide whether or not to take part. What is the aim of this study? The study wants to find out what you think about the advance care planning process and how you have been involved in any decisions about your care. Who is doing the study? The study is being carried out by Ben who is studying at Edge Hill University. The university is paying for the study to be done. Why have I been invited to take part? You are being asked to take part as you are a young person aged 13-15 years old and have an advance care plan to help plan the care you need. Ben would like to ask you about your experiences of the advance care planning process and how you have been involved in conversations about your care. It is important to hear your opinions, where possible, and your involvement in this research would be really valuable.

Who else is being spoken to? Ben will also be talking to other people involved in using advance care plans for people aged 13-15 years old. He will talk to other people about the same age as you, their parents/carers and people who are part of the team using advance care plans, such as the nurse or doctor, to see what they all think of the plans and how they use them. Ben will also talk with your parent/carer and the staff who have been part of your advance care planning to see what they think about using the plans.

What will happen to me if I say I want to take part? It’s completely up to you if you want to take part and if you do decide to be interviewed, we will arrange a time for Ben to come and talk to you about your experiences. We can also decide where to meet and how you would feel most comfortable to chat. It is also your decision if you would like to chat to Ben alone, or if you would like an adult with you for support or to help you communicate your experiences more easily. Even if you want someone with you, you will still be asked the questions. The conversation will be recorded so Ben can remember the important things that you tell him.

Do I have to take part?

388

No. It is up to you to decide whether or not to take part. No-one will mind if you would rather not take part. If you do take part, you can change your mind up to a week after the interview without telling anyone why. No-one will mind. Will anyone else know I'm doing this? Your parents/carers will know that you are taking part and they have to agree for you to talk to Ben. However, no-one will know what you have said unless you say something which makes Ben think you are being harmed by someone. Some of the things you say might be used in reports, but no-one will know

that it was you that said them. What are the good things about taking part? The information that you share could help make things better for other young people who use an advance care plan. Are there any bad things about taking part?

There aren’t any bad things about taking part, but sometimes it can be upsetting to talk about what you’re going through. If this happens, Ben might move on to a different question or suggest rearranging the chat for a different day. If at any point you want to have a break or want to stop taking part in the study, you just need to say. What will be done with the things I talk about? Some of the things you tell Ben will be written up in a big book he is writing called a thesis. Other things might be used to write articles or make presentations for other people who work with young people using advance care plans. No-one apart from Ben will know what you have said during the interview because he will give you a false name. Did anyone check the study is OK to do? Before any study like this can start, it is checked by a group of people from the University. They meet and read everything about the study to make sure that the project is okay to do.

What if I have questions that aren’t about the study? Sometimes when we talk to people about difficult subjects like advance care plans, we might have some questions but don’t know who to ask. Ben will make sure that you have any information you might need about who else you can talk to. What if I have some questions about the study?

If you have any questions about the study, please talk to your parents/carers so they can phone Ben on 01695 654 354 or email him at [email protected] If you have any concerns about the research and do not want to speak to Ben, your parents/carers can contact Dr Katherine Knighting, who a Senior Researcher at Edge Hill University, on 01695 657 170 or email [email protected]

If they would prefer to talk to someone outside the research team or if you are not happy with the way I deal with your problem they can contact Professor Clare Austin, who is the Associate Dean, Research & Innovation, on 01695 650 772 or email [email protected]

Appendix 10

389

Invitation email to HCPs

Dear…………

Re: ACP Experiences Project - A multiple case study of the views and experiences of young people, their parents/carers and healthcare professionals in the advance care planning process.

Following an interview for the above study with the family of a young person aged xxx using an advance care plan (ACP), I would like to invite you to take part in a short telephone interview as a professional involved in supporting the ACP in this case. The purpose of the interview is to explore your experience of the ACP provided to the young person and their family. The study aims to provide new insights into the challenges and facilitators of using an ACP to highlight what is needed to provide the best supportive care for young people and their families.

Please find attached a Participant Interview Sheet with more information about the study and what it will involve.

Please contact me by email or on the number below to confirm whether or not you wish to take part in a case study interview, or if you have any questions or concerns.

Yours sincerely

Ben Hughes

Email: [email protected]: (01695) 654 354

Appendix 11

390

mailto:[email protected]

Example interview guide for young people

Interview guide for young people (13-24 years)

1. Please can you start by telling me a little bit about yourself. [This is an icebreaker question to start the conversation.]

I’d like to start by asking you about your experience of having an advance care plan.

2. What do you think an advance care plan is for?

3. How old were you when your Advance Care Plan was first discussed with you? Prompts:

• Who discussed it with you? • How was it raised? • Where did it happen? • Did you feel the timing was right for you? If not, when would have been

better? 4. Can you tell me about your involvement in discussions about your Advance Care

Plan? Prompts:

• Would you have liked more/less involvement? • What information were you given? • What support were you offered? • Challenges to the development of the advance care plan? (If not covered

above)

5. How does having an Advance Care Plan make you feel? Prompts:

• Better care? • Communication/relationships with your family/Healthcare Professionals? • Challenges/benefits? • Enough information? • Who would you talk to if you have a problem?

6. What are your thoughts on involving children in their advance care planning?

Prompts: • When involvement should start? • How it should be raised and developed? • Benefits? • Challenges?

7. What do you think would be the best way to involve children in their advance care plan? Prompts:

391

• What is it? • Who should be involved? • How? • Timing?

8. Is there anything else you would like to say about your experience of having an

Advance Care Plan for yourself, or that you have thought about while we were talking?

Appendix 112 Example consent/assent form

392

ASSENT FORM for young people (13-15 years)

A multiple case study of the views and experiences of young people, their parents/carers and healthcare professionals in the advance care planning

process.

Names of Project Team: Ben Hughes, Katherine Knighting, Mary O’Brien and Anita Flynn.

Child (or if unable, parent on their behalf) to initial all they agree with:

1. Has somebody else explained this project to you?

2. Do you understand what this project is about?

3. Have you asked all the questions you want?

4. Have you had your questions answered in a way you understand?

5. Do you understand it’s OK to stop taking part at any time?

6. Are you happy to take part?

7. Are you happy for anonymised information to be shared with other researchers? This means that you will be given a false name rather than a real name so no-one will able to identify who you are from the information.

If you do want to take part, you can write your name below Your name _____________________ Date _____________________ _______________________ __________ _________________________________ Person taking consent Date Signature

1 copy for study file 1 copy for participant (if wanted) Participant ID:……………. (to be completed by researcher)

Appendix 13Example of post-interview support information

393

Post-interview support information for young people (13-15 years)

The following organisations are available to support you if there are issues that have come about in connection with this study.

Your care team is always available as a first point of contact to offer you support and provide information about further services available to you.

Hospice/Hospital/Organisation Family Support Team -

Together for Short Lives helps children and their families have as fulfilling lives as possible and the very best care at the end of life.

Tel: 0808 8088 100 Web: http://www.togetherforshortlives.org.uk

Child Bereavement UK supports families when a child of any age dies or is dying, or when a

child is facing bereavement. You can phone them from Monday-Friday 9-5 or look at their website for specific support: http://childbereavementuk.org/

Appendix 14 Interview guide for parents/carers

394

Where do I go for further support?

http://childbereavementuk.org/

http://www.togetherforshortlives.org.uk/

Interview Guide for Parents/Carers [x] Indicates the child’s name.

1. Please can you start by telling me about [x], their condition and the support they currently receive?

a. Age b. Condition c. Current services and support received

I’d like to move on to talk specifically about your views and experience of advance care planning.

2. Who first raised the subject of an Advance Care Plan for [x] with you? Prompts:

• What were the circumstances that led to the Advance Care Plan being raised/discussed?

• Did you feel the timing was right for you? If not, when would have been better?

• Were you given enough information about advance care plans? If not, what would have been useful?

• Did you think they were the right person to raise the idea of the Advance Care Plan with you? If not, who do you think should have brought it up?

• Challenges to the issue being raised? (If not covered above)

3. What is your experience of developing an Advance Care Plan for [x] from when it was first raised to now? Prompts:

• Who else has been involved in the discussions? Do you think they were the right people?

• Was paperwork readily available/easy to complete? • Did any circumstances/people help the process? (if not covered above) • Challenges to the development of the advance care plan? (If not covered

above)

4. What do you think about involving your child in the Advance Care Planning process? Prompts:

• Why did/didn’t involve young person? • How? • When? • Challenges/benefits?

5. Have you noticed any difference in your child’s care since starting to use the

Advance Care Plan? Prompts:

395

• Communication/relationships between yourselves and Healthcare Professionals, or between Healthcare Professionals from different services?

• Any aids to using an Advance Care Plan? • Challenges in use of the Advance Care Plan?

6. In your opinion, what is an effective Advance Care Plan for young people? Prompts:

• Who should be involved? • When? • How? • Challenges/benefits?

7. Is there anything else you would like to say about your experience of developing

and using an Advance Care Plan for your child, or any related issues?

Appendix 15

396

Interview guide for Healthcare professionals (HCPs)

Interview Guide for Healthcare Professionals [x] Indicates the child’s name.

1. Please can you start by telling what your current job role is and where you work?

Prompts: Time in current role/place of work? Time working with children with life-limiting conditions or complex healthcare

needs?

2. Can you tell me about your role in the care currently provided to [x]?

I’d like to move on to talk specifically about your views and experience of advance care planning.

3. From your understanding, who first raised the subject of an advance care plans for [x]?

Prompts: What were the circumstances that led to the ACPT being raised/discussed? Did you feel the timing was right for the family? If not, when would have been

better? Did you think that [you/the person] who raised it was the right person to raise the

idea of the ACP with the family? If not, who do you think should have brought it up? Challenges to the issue being raised? (if not covered above)

4. Please can you talk me through your involvement of implementing/supporting the ACP for [x] with them and their family?

Prompts: What information was given? Anyone else involved? Completing the paperwork? Young person involved? Expand if so. If not, why not? Challenges?

5. Do you think that you were able to provide enough information to [x]’s parents/carers (and [x] if appropriate) about the advance care plan for [x]?Prompts:

What information is there for your professional role and/or for young people and their parents/carers?

Professional needs/training? Do you know who to talk to/contact if you have any questions/problems? If you could give any advice to someone thinking about using ACPs, what

would it be?

397

6. Have you noticed any differences in the care of [x] since the advance care plan was put in place?Prompts:

Communication/Relationships between the family and Healthcare Professionals, or professionals from different services?

Challenges/benefits?

7. What do you think are the key issues in terms of implementation and supporting the development of Advance Care Plans with families?

Prompts:a. Involvement of young people in their own advance care planning discussions? b. Challenges/benefits?

8. What do you think about involving young people in the advance care planning process?

Prompts: Why does it happen or not happen? How/When are they involved? Challenges/benefits?

9. In your opinion, what is an effective advance care plan for young people? Prompts:

What is an advance care plan? Who should be involved? When? How? Challenges/benefits?

10. Is there anything else you would like to say about your experience of developing

and using an ACP for [x] or that you thought about while we were talking?

Appendix 16

398

Transcription convention

Symbol Meaning

[ Indicates the point of overlap on onset

] Indicates the point of overlap termination

= (a) Turn continues below, at the next identical symbol

(b) If inserted at the end of one speaker’s turn and at the

beginning of the next speaker’s adjacent turn, it indicates

that there is not a gap between the two turns

(3.2) An interval between utterances, denoted in silence by tenths of

seconds, so (7.1) is 7 seconds and one-one tenth of a second

(.) A very short untimed pause

word Underlining indicates speaker emphasis

e:r the::: Indicates lengthening of the preceding sound

- A single dash indicates an abrupt cut-off

? Rising intonation, not necessarily a question

! An animated or emphatic tone

, Indicates low-rising intonation, suggesting continuation

. A full stop indicates falling (final) intonation

CAPITALS Especially loud sounds relative to surrounding talk

◦ ◦ Utterances between degree signs are noticeably quieter than

surrounding talk

◦◦ ◦◦ Considerably quieter than surrounding talk

↑ ↓ Indicate marked shifts into higher or lower pitch in the utterance

following the arrow

> < Indicate that the talk they surround is produced more quickly than

neighbouring talk

( ) A stretch of unclear or unintelligible speech

(guess) Indicates transcriber doubt about a word

(( )) Contain the transcriber’s descriptions rather than, or in addition

to, transcriptions

.hh Speaker in-breath

hh Speaker out-breath

399

((T shows picture)) Non-verbal actions or editor’s comments

ja

yes

Translations into English are italicised and located on the line

below the original utterance

[gibee] In the case of inaccurate pronunciation of an English word, an

approximation of the sound is given in square brackets

[ӕ] Phonetic transcriptions of sounds are given in square brackets

Smiley voice

Serious tone (contrasts with smiley face)

# Creaky voice

X_____ The gaze of the speaker is marked above an utterance and that of

the addressee below it. An unbroken line (____) indicates that the

party marked is gazing towards the other; absence indicates lack

of gaze. Dots ( . . . ) mark the transition from non-gaze and the

point where the gaze reaches the other is marked by X. Commas

( ,,, ) indicate the moment when gaze is shifted.

Appendix 17Example of transcription

400

Ben Okay and d’you know

whether kind of informal discussions began around his future >sort of< (.) that time

[ ]

James Yeah (0.1) [dat] time (.) we

have formal discussion (.) er (0.9) er [de] specialist (.) er (1.0) supported quite well

during [dat] time (.) er (0.2) because we didn’t- we didn’t know [anyting] about [dis]

[condison]

Ben ◦Okay◦

James So he [gadually] (0.5) after (0.9) two [or] [t’ree] (0.3) meetings (1.3)=

[ ]

Ben ◦M::◦

James =[Dey’ve] (1.1) ex- er (0.4) explain [everyting] to us that (0.8) Ba:rtholomew suffer

with muscular dystrophy and (0.8) in future (1.7) his future is something like [dis] so

(0.5) we knew very earlier [dat] Bartholomew (1.3)=

[ ]

Ben ◦M::◦

(James, Parent, Bartholomew’s case study, lines 650-668)

Appendix 18Confirmation of Edge Hill University faculty research ethics committee (FREC) approval

401

24th May 2016

Dear Ben,

Thank you for submitting your research ethics application ‘The multiple case study of the views and experiences of young people, their parents/carers and healthcare professionals in the advances care planning process.’ (Project Ref: FOSH145) to the Faculty of Health & Social Care Research Ethics Committee.

I have pleasure in informing you that the Committee recommended that your study is granted Faculty of Health & Social Care research ethics approval, subject to the following conditions:

Ethical approval covers only the original study for which it is sought. If the study is extended, changed, and / or further use of samples or data is needed the Committee Administrator, Daniel Brown, must be contacted for advice as to whether additional ethical approval is required.

(NHS studies only) NHS Research governance processes must be adhered to. An application must be made to the HRA for approval for the research to be conducted in the NHS. All NHS R&D departments (in Trusts where data is being collected) will also need to be approached for Trust permission to proceed.

If the project requires HRA approval and/or NHS ethical approval, please forward evidence of the approval(s) to Daniel Brown ( [email protected] k ) before commencing the study

The Principle Investigator is responsible for ensuring that all data are stored and ultimately disposed of securely in accordance with the Data Protection Act (1998) and as detailed within the approved proposal.

The Principle Investigator is responsible for ensuring that an annual monitoring form and an end of study form, where appropriate, is sent to the Committee Administrator ( [email protected] k ). The form will be sent to you at the appropriate time by the Committee Administrator.

The study documentation that has been reviewed and approved is detailed below:

<doc title> <version no & date>Proposal V2, 17.05.2016Demographic Form for identification of eligible V1 04.04.2016

402

young people

Invitation flyer for parents/carers V1 04.04.2016Information pack letter for parents/carers V1 04.04.2016Participant Information Sheet for parents/carers V1 04.04.2016Participant Information Sheet for young people(13-9)

V1 04.04.2016

Consent form for parents/carers V1 04.04.2016Interview guide for parents/carers V1 04.04.2016Assent form for young people (13-19) V1 04.04.2016Interview guide for young people (13-19) V1 04.04.2016Invitation email to Healthcare Professionals V1 04.04.2016Participant Information Sheet for HealthcareProfessionals

V1 04.04.2016

Consent form for Healthcare Professionals V1 04.04.2016Interview guide for Healthcare Professionals V1 04.04.2016

Yours sincerely

Edmund HorowiczActing Chair Faculty of Health & Social CareResearch Ethics Committee

Appendix 19 Confirmation of National Health Service (NHS) research ethics committee (REC) approval

403

North West - Greater Manchester Central Research Ethics Committee 3rd Floor

Barlow House 4 Minshull Street

Manchester M1 3DZ

Telephone: 0207 104 8009 Please note: This is the favourable opinion of the REC only and does not allow you to start your study at NHS sites in England until you receive HRA Approval

14 October 2016

Mr Ben Hughes PhD student Edge Hill University St Helens Road Ormskirk Lancashire L39 4QP Dear Mr Hughes

Study title: A multiple case study of the views and experiences of young people, their parents/carers and healthcare professionals in the advance care planning process.

REC reference: 16/NW/0643 IRAS project ID: 206015

Thank you for your letter of 3rd October 2016, responding to the Committee’s request for further information on the above research and submitting revised documentation. The further information has been considered on behalf of the Committee by the Chair. We plan to publish your research summary wording for the above study on the HRA website, together with your contact details. Publication will be no earlier than three months from the date of this opinion letter. Should you wish to provide a substitute contact point, require further information, or wish to make a request to postpone publication, please contact the REC Manager, Miss Amber Ecclestone, [email protected].

Confirmation of ethical opinion

On behalf of the Committee, I am pleased to confirm a favourable ethical opinion for the above research on the basis described in the application form, protocol and supporting documentation as revised, subject to the conditions specified below.

404

Conditions of the favourable opinion

The REC favourable opinion is subject to the following conditions being met prior to the start of the study.

Management permission must be obtained from each host organisation prior to the start of the study at the site concerned.

Management permission should be sought from all NHS organisations involved in the study in accordance with NHS research governance arrangements. Each NHS organisation must confirm through the signing of agreements and/or other documents that it has given permission for the research to proceed (except where explicitly specified otherwise). Guidance on applying for NHS permission for research is available in the Integrated Research Application System, www.hra.nhs.uk or at http://www.rdforum.nhs.uk.

Where a NHS organisation’s role in the study is limited to identifying and referring potential participants to research sites ("participant identification centre"), guidance should be sought from the R&D office on the information it requires to give permission for this activity.

For non-NHS sites, site management permission should be obtained in accordance with the procedures of the relevant host organisation.

Sponsors are not required to notify the Committee of management permissions from host organisations

Registration of Clinical Trials

All clinical trials (defined as the first four categories on the IRAS filter page) must be registered on a publically accessible database within 6 weeks of recruitment of the first participant (for medical device studies, within the timeline determined by the current registration and publication trees).

There is no requirement to separately notify the REC but you should do so at the earliest opportunity e.g. when submitting an amendment. We will audit the registration details as part of the annual progress reporting process.

To ensure transparency in research, we strongly recommend that all research is registered but for non-clinical trials this is not currently mandatory.

If a sponsor wishes to contest the need for registration they should contact Catherine Blewett ([email protected]), the HRA does not, however, expect exceptions to be made. Guidance on where to register is provided within IRAS.

It is the responsibility of the sponsor to ensure that all the conditions are complied with before the start of the study or its initiation at a particular site (as applicable). Ethical review of research sites

NHS sites

The favourable opinion applies to all NHS sites taking part in the study, subject to management permission being obtained from the NHS/HSC R&D office prior to the start of the study (see "Conditions of the favourable opinion" below).

Non-NHS sites

405

http://www.rdforum.nhs.uk/

http://www.hra.nhs.uk/

Approved documents

406

Statement of compliance The Committee is constituted in accordance with the Governance Arrangements for Research Ethics Committees and complies fully with the Standard Operating Procedures for Research Ethics Committees in the UK. After ethical review

Reporting requirements

The attached document “After ethical review – guidance for researchers” gives detailed guidance on reporting requirements for studies with a favourable opinion, including:

Notifying substantial amendments Adding new sites and investigators Notification of serious breaches of the protocol Progress and safety reports Notifying the end of the study

407

The HRA website also provides guidance on these topics, which is updated in the light of changes in reporting requirements or procedures.

User Feedback

The Health Research Authority is continually striving to provide a high quality service to all applicants and sponsors. You are invited to give your view of the service you have received and the application procedure. If you wish to make your views known please use the feedback form available on the HRA website:http://www.hra.nhs.uk/about-the-hra/governance/quality-assurance/

HRA Training We are pleased to welcome researchers and R&D staff at our training days – see details at http://www.hra.nhs.uk/hra-training/

16/NW/0643 Please quote this number on all correspondence

With the Committee’s best wishes for the success of this project.

Yours sincerely

Signed on behalf of Professor S J Mitchell Chair

Appendix 20

408

http://www.hra.nhs.uk/hra-training/

http://www.hra.nhs.uk/about-the-hra/governance/quality-assurance/

Confirmation of Health Research Authority (HRA) approval

Page 1 of 9

Mr Ben Hughes PhD student Edge Hill University St Helens Road Ormskirk Lancashire L39 4QP

Email: [email protected]

409

Appendix 21 Pseudonyms used in the study

Pseudonym Descriptor

Case study 1 – Andrew Young person

Case study 1 – Elizabeth Grandparent

Case study 1 – Susannah Carer

Case study 1 – John Consultant Paediatric Neurologist

Case study 2 – Bartholomew Young person

Case study 2 – James Parent

Case study 2 – Matthew Consultant Paediatric Neurologist

Case study 2 – Eve Consultant Respiratory Physiotherapist

Case study 2 – Joanna Ventilation Specialist Nurse

Case study 3 – Peter Young person

Case study 3 – Lydia Parent

Case study 3 – Mary Hospice Clinical Manager

Case study 3 – Ruth Consultant Paediatrician

Case study 3 – Sarah Paediatric Palliative Care Consultant

Case study 4 - Miriam Young person

Case study 4 - Rachel Parent

Case study 4 – Hannah General Paediatrician

Lightfog Hospital Children’s hospital

Foxmere House Children’s hospice

Goldville House Children’s hospice

Deepford House Children’s hospice

The Aldfort Centre A regional centre to support adults and young

people with Muscular Dystrophy

Ironcoast City

Westport Town

Summercourt Town

Appendix 22Extracts from my personal reflective diary

410

Extract 1 – 19th July 2017

I arrived early to ensure that I had access to the room and could set it up in a way which was comfortable for myself and interviewer and the participants being interviewed. It was a warm day so I also wanted to make sure that drinks were available and the room had enough air. I checked that the Dictaphone worked and everything was ready to start. I wasn’t particularly nervous about the interviews and felt that I had a clear interview schedule that would take me logically through the topic and give me space to answer additional questions. I also thought that the participants would be willing to talk about their experiences because I have previously spoken to all of them about my research and they were keen to be involved.

However, once the interview started with the YP I realised that interviewing is very difficult. He was quite reluctant to speak much and even found it difficult to take in what I was saying about my study before the interview started. I think that there weren’t too many pauses while I thought of questions or points to raise when the conversation went quiet, but there were too many questions repeated and opportunities missed for further questioning and probing. This wasn’t helped by the YP being particularly quiet and not very forthcoming with opinions, but it is something I need to think about for future interviews. It felt really good to have my first data and I’ve got some rich information from this interview to help inform future interviews.

Extract 2 – 26th July 2017

The interview with the parent was the best interview so far. It was also the longest interview. He was very open and honest with what he was saying and shared his views about many different aspects of ACP.

I feel sorry for the parent after this interview. The passion and love he has for his son has come through the interview, as has the strong dislike he has for GPs and the frustration he has for his son’s care. These may be points I could look out for in future interviews.

411

Appendix 23Conference presentations, September 2018

Poster presentation for Martin House Research Centre 1st Biennial Research conference, York, UK, 21st September 2018

412

Oral presentation for ‘Too Little Too Late’ International research on Paediatric Palliative Care Conference, Blackpool, UK, 14th September 2018

Appendix 24Example of training undertaken for my PhD

Date Details of training/conference

Learning outcomes/brief

summary of participation

Researcher Development Framework

descriptor(s) addressed

413

http://rdfplanner.vitae.ac.uk/



7/09/2015- GTA/PhD Student Induction – the doctoral process, including research student training

Exploring the PhD journey and expectations of being a GTA

Research governance and organisation – research management

8/09/2015 GTA/PhD Student Induction – Code of Practice and Ethics

Introduction to the Code of Ethics and the relevance of and ethical processes related to PhD research

Research governance and organisation – research management and professional conduct

9/09/2015 GTA/PhD Student Induction – Teaching induction

Highlighting teaching expectations and processes for departmental teaching

Engagement and influence – working with others

09/09/2015

GTA/PhD Student Induction – PGR monitoring, progress and research design

Outline of the PGR journey, what is expected during a PhD and exploring what is included in research, the research process and the inter-related nature of elements of research within research design

Research methods – theoretical approaches

10/09/2015

GTA/PhD Student Induction – Reviewing the literature, claims to knowledge and the original contribution to knowledge

Understanding of a literature critique and how it links to developing a PhD as an original contribution to knowledge within specific concepts

Knowledge and intellectual abilities – information seeking

Appendix 25Individual Development Plan

Areas to develop Short-term goals

Long-term goals

Steps for completion

of goals

Outcomes

Continue to publish Publish at least 1 Develop a Attend writing Evidence of a

414

work from my PhD study

article in a high-impact journal

Publish 2-3 additional articles in a low-impact journals or other outlets, such as The Conversation

Submit abstracts to present at conferences

strong publication record

workshops to continue to develop academic writing skills

Present to colleagues and small-scale conferences to continue to develop oral presentation skills

successful publication and dissemination record

Increased presence on social media

Evidence of greater engagement in professional networks

Skills/research development

Work with a mentor to identify potential areas to undertake small research projects

Continue to develop professional networks with existing and new colleagues (academic and non-academic) to collaborate on research projects

Identify research to undertake

Continue developing professional networks

Develop a record of securing independent funding

Attend training on different research methods

Attend grant writing workshops

Identify research grants to complement ongoing research

Explore working collaborative with colleagues to share skills and knowledge to undertake research

Evidence of grant(s) being awarded

Collaboration with colleagues on different research studies

Evidence of completed research

Supervise undergraduate/postgraduate students

Supervision meetings with undergraduate/ postgraduate dissertation students

Develop a strong record of supervising students

Undertake training to mentor students

Evidence of student achievement

Evidence of positive feedback from supervised students

Develop teaching skills

Continue to teach and contribute to modules I am

Continue to teach in areas I am already

Speak to colleagues to explore

Evidence of teaching, positive student

415

currently teaching

Explore opportunities for teaching on, and contributing to, modules I am unfamiliar with

experience, such as health and social care; end-of-life care; and death, dying and bereavement

Develop my teaching in areas I have not already taught, such as disability, inclusion, and non-clinical aspects of nursing

teaching opportunities

Develop my understanding of different curricula

Shadow colleagues in teaching areas identified

feedback, and achievement of key performance indicators

Performance review

416

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