Post on 14-Aug-2020
THE PALLIATIVE CARE REFERRAL DECISION-MAKING PROCESS IN THE ACUTE CANCER
SETTING: NURSES’ ADVOCACY BEHAVIOURS
AND THE FACTORS INFLUENCING THESE
BEHAVIOURS
Sarah Northfield
BN, RN, GradCert (Cancer Nursing)
Submitted in fulfilment of the requirements for the degree of
Master of Applied Science (Research)
Institute of Health and Biomedical Innovation
Faculty of Health
Queensland University of Technology
2018
Nurses’ advocacy behaviours and the factors influencing these behaviours i
Supervision Team
Principal Supervisor
Professor Patsy Yates
Head, School of Nursing, Queensland University of Technology;
Director, Centre for Palliative Care Research and Education, Queensland Health;
Professor, School of Nursing and Institute of Health and Biomedical Innovation,
Queensland University of Technology;
Professor, Cancer Nursing Professorial Precinct, Cancer Care Services, Royal
Brisbane and Women’s Hospital, Queensland Health.
Associate Supervisors
Professor Raymond Chan
Professor, School of Nursing and Institute of Health and Biomedical Innovation,
Queensland University of Technology;
Professor, Metro North Hospital & Health Service, Queensland Health;
Professor, Cancer Nursing Professorial Precinct, Cancer Care Services, Royal
Brisbane and Women’s Hospital, Queensland Health.
Dr John Rosenberg
Research Fellow, NHMRC Centre of Research Excellence in End of Life Care,
Institute of Health and Biomedical Innovation, Queensland University of
Technology.
ii Nurses’ advocacy behaviours and the factors influencing these behaviours
Publications Related To This Thesis
Conference presentations
1. Northfield S, Chan RJ, Rosenberg J, Yates P. (2016). Factors that influence
palliative care referrals for hospitalised patients with advanced cancer: An
integrative review. Cancer Nurses Society of Australia (CNSA) 19th Annual
Congress, 12–14 May 2016, Cairns, Australia.
2. Northfield S, Chan RJ, Rosenberg J, Yates P. (2017). Factors associated with
patient access to specialist palliative care services in acute cancer care setting.
Australian Palliative Care Conference, 6–8 September 2017, Adelaide,
Australia.
3. Northfield S, Chan RJ, Rosenberg J, Yates P. (2017). Identifying the factors
that influence cancer nurses advocating for patient referrals to specialist
palliative care services: A national survey. Australian Palliative Care
Conference, 6–8 September 2017, Adelaide, Australia.
Nurses’ advocacy behaviours and the factors influencing these behaviours iii
Keywords
Advanced cancer, backward stepwise regression, behaviour change, BCW, cancer care, cancer nurse, COM-B model, decision-making process, descriptive statistics, factors, nursing advocacy, palliative care, referral, SPCS, survey, TDF.
iv Nurses’ advocacy behaviours and the factors influencing these behaviours
Abstract
Background
Despite early referrals to specialist palliative care services (SPCS) providing
significant benefits to patients with advanced cancer, referrals often occur late in the
disease trajectory. The advocacy role of cancer nurses in influencing referrals to
SPCS is not well understood. Gaining an understanding of their advocacy role will
inform future interventions for promoting early referrals to SPCS.
Aims
This study focused on expanding understanding of the clinical, professional
and health system factors that influence the decision-making process for a referral to
be made to SPCS for hospitalised patients with advanced cancer. The purpose of this
study was to examine the actions cancer nurses take to advocate for the referral of
patients with cancer to SPCS, the frequency and timing of these actions, and the
factors influencing these actions.
Methods
A cross-sectional survey design was used. Stage One involved the development
of a survey instrument for measuring the frequency of cancer nurses’ advocacy
behaviours for patient referrals to SPCS and the demographic factors and potential
determinants associated with these behaviours. Survey development was guided by
the conceptual framework for this study (made up of Theoretical Domains
Framework (TDF), Capability Opportunity Motivation–Behavioural (COM-B) model
and Behaviour Change Wheel (BCW)), selected survey instruments, relevant
literature and expert opinion. The survey instrument was reviewed by six content
experts and pilot tested with a purposive sample of six postgraduate nursing students
(response rate 60%) enrolled at Queensland University of Technology (QUT). Using
the refined survey instrument, the second stage of this study involved an online
Nurses’ advocacy behaviours and the factors influencing these behaviours v
cross-sectional survey of cancer nurses distributed through two professional
organisations.
Results
Of the 130 respondents, most were experienced cancer nurses (63.8%, n =
81/127) and working in major cities (75.4%, n = 92/122) with access to a dedicated
SPCS (86.9%, n = 113/130). Mean scores indicated respondents performed the 11
nursing advocacy behaviours listed in the survey within the past year. The two most
commonly reported types of nursing advocacy behaviours always performed were
counselling (M = 14.72, SD = 3.45, 25.95%) and analysing (M = 11.49, SD = 3.00,
24.79%) behaviours. In contrast, only 18.18% of the sample reported always
performing responding behaviours (M = 4.85, SD = 1.87).
Nurses generally had favourable perspectives about advocating for patient
referrals to SPCS. Most survey respondents always or often advocated for referral
when end of life was imminent (n = 95/121, 78.5%) and often advocated for referral
when no further curative treatment could be offered for advanced cancer (n = 96/121,
79.3%). Respondents rarely or never advocated for referral at diagnosis of cancer,
regardless of prognosis (n = 83/121, 68.6%).
Multivariable analyses identified that cancer nurses with the scope to directly
refer and positive motivations towards SPCS engaged in all types of nursing
advocacy behaviours more frequently than other nurses. A statistically significant
positive relationship was identified between completion of palliative care specific
education and the frequency of counselling behaviours. A statistically significant
negative relationship was identified between cancer nurses who worked in
metropolitan areas and the frequency of responding behaviours.
Conclusions
This was the first Australian study to identify the advocacy role of cancer
nurses in the referral decision-making process to SPCS. Cancer nurses frequently
vi Nurses’ advocacy behaviours and the factors influencing these behaviours
advocated for referrals to SPCS if they had positive beliefs and the scope of practice
to directly refer to the service. Future research should examine the referral decision-
making process from the perspectives of all key stakeholders (patients, caregivers,
physicians, nurses and allied health professionals) to select central target behaviours
and design behaviour change interventions to promote appropriate referrals to SPCS.
Nurses’ advocacy behaviours and the factors influencing these behaviours vii
Table of Contents
Supervision Team ..................................................................................................................... i
Publications Related To This Thesis ........................................................................................ ii
Keywords ................................................................................................................................ iii
Abstract ................................................................................................................................... iv
Table of Contents ................................................................................................................... vii
List of Figures ........................................................................................................................... x
List of Tables .......................................................................................................................... xi
List of Abbreviations ............................................................................................................. xii
Statement of Original Authorship ......................................................................................... xiii
Acknowledgements ............................................................................................................... xiv
Introduction ...................................................................................... 1
1.1 BACKGROUND AND THE SCOPE OF THE PROBLEM .......................................... 1
1.2 PURPOSE ....................................................................................................................... 3
1.3 CONTEXT ...................................................................................................................... 3
1.4 SIGNIFICANCE ............................................................................................................ 5
1.5 SCOPE OF THIS STUDY.............................................................................................. 6
1.6 STUDY DEFINITIONS ................................................................................................. 7
1.7 THESIS OUTLINE ...................................................................................................... 10
Conceptual Framework ................................................................. 13
2.1 INTRODUCTION ........................................................................................................ 13
2.2 FACILITATING BEHAVIOUR CHANGE IN THE HEALTHCARE SETTING ..... 13
2.3 THE BEHAVIOUR CHANGE WHEEL (BCW) ............................................................ 15
2.4 APPLYING THE FRAMEWORKS TO THE BEHAVIOUR OF INTEREST ........... 19
2.5 CONCLUSION ............................................................................................................ 20
Integrative Review .......................................................................... 21
3.1 INTRODUCTION ........................................................................................................ 21
3.2 AIMS ............................................................................................................................ 21
3.3 METHODS ................................................................................................................... 21
3.4 OUTCOMES OF THE LITERATURE SEARCH ....................................................... 23
3.5 QUALITY APPRAISAL OUTCOMES ....................................................................... 27
3.6 FINDINGS .................................................................................................................... 27
3.7 DISCUSSION ............................................................................................................... 39
3.8 LIMITATIONS ............................................................................................................ 41
3.9 CONCLUSION ............................................................................................................ 43
viii Nurses’ advocacy behaviours and the factors influencing these behaviours
Stage One Methods & Results ....................................................... 45
4.1 AN OVERVIEW OF THE RESEARCH DESIGN ..................................................... 45
4.2 INTRODUCTION TO STAGE ONE .......................................................................... 45
4.3 STAGE ONE: DEVELOPMENT OF THE QUESTIONNAIRE ................................ 45
4.4 EXPERT PANEL ......................................................................................................... 61
4.5 PILOT TEST ................................................................................................................ 62
4.6 STAGE ONE RESULTS ............................................................................................. 64
Stage Two Methods ........................................................................ 69
5 STAGE TWO METHODS: MAIN STUDY ............................................................... 69
5.1 INTRODUCTION ....................................................................................................... 69
5.2 ETHICAL CONSIDERATIONS ................................................................................. 77
5.3 SUMMARY ................................................................................................................. 79
Stage Two Results ........................................................................... 81
6.1 INTRODUCTION ....................................................................................................... 81
6.2 SAMPLE CHARACTERISTICS FOR THE CROSS-SECTIONAL SURVEY ......... 81
6.3 SCALE RELIABILITY AND MISSING DATA ........................................................ 86
6.4 FREQUENCY OF NURSING ADVOCACY BEHAVIOURS FOR PATIENT REFERRALS TO SPCS OVER A 12-MONTH PERIOD ..................................................... 88
6.5 FACTORS INFLUENCING NURSING ADVOCACY BEHAVIOURS ................... 90
6.6 FREQUENCY OF ADVOCATING FOR REFERRALS TO SPCS AT SPECIFIC TIME POINTS ....................................................................................................................... 91
6.7 RELATIONSHIPS BETWEEN DEMOGRAPHIC FACTORS, POTENTIAL BEHAVIOURAL DETERMINANTS AND NURSING ADVOCACY BEHAVIOURS .... 93
6.8 THE RELATIONSHIPS BETWEEN SELECTED DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS AND THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS ............................................................................ 98
Discussion & Conclusion .............................................................. 105
7.1 INTRODUCTION ..................................................................................................... 105
7.2 WHAT IS THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS FOR PATIENT REFERRALS TO SPCS OVER A 12-MONTH PERIOD? ............................... 105
7.3 WHAT ARE THE POTENTIAL BEHAVIOURAL DETERMINANTS (AS DEFINED BY THE DOMAINS OF THE DIBQ) INFLUENCING NURSES ADVOCATING FOR PATIENT REFERRALS TO SPCS? ............................................... 107
7.4 WHAT ARE THE MOST COMMON TIME POINTS FOR CANCER NURSES TO ADVOCATE FOR PATIENT REFERRALS TO SPCS? .................................................... 108
7.5 WHAT ARE THE RELATIONSHIPS BETWEEN THE DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS THAT INFLUENCE NURSING ADVOCACY BEHAVIOURS AND THE FREQUENCY OF THESE BEHAVIOURS? .................................................................................................................. 110
7.6 CAN THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS BE EXPLAINED BY THE DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS THAT INFLUENCE THESE BEHAVIOURS? .... 113
Nurses’ advocacy behaviours and the factors influencing these behaviours ix
7.7 IMPLICATIONS ........................................................................................................ 114
7.8 LIMITATIONS OF THE STUDY ............................................................................. 119
7.9 RECOMMENDATIONS FOR FUTURE RESEARCH ............................................. 120
7.10 CONCLUSIONS ........................................................................................................ 121
References ............................................................................................................... 125
Appendices .............................................................................................................. 137
PRISMA Flow diagram ................................................................................... 137
Table B1 The behavioural analysis using the TDF domains linked to the COM-B model ................................................................................................................................. 139
Email invitation, email reminder – content validity ......................................... 141
Participant information sheet – content validity ............................................... 145
Definitions of key constructs & content validity instructions ........................... 147
Initial NACC questionnaire ............................................................................... 148
Survey evaluation form – content validity ....................................................... 169
Email invitation, email reminder – face validity & pilot testing ...................... 174
Pilot test instructions .......................................................................................... 179
Participant information sheet – face validity & pilot testing ............................. 181
Survey evaluation form – face validity ............................................................ 183
Final NACC questionnaire ................................................................................ 189
QUT HREC approval – cross-sectional study ................................................. 209
QUT HREC approval of amendments – cross-sectional study ........................ 211
HSANZ approval to distribute survey to Australian nursing membership ...... 213
CNSA approval to distribute survey to membership ........................................ 215
Scatterplot for relationship between years of experience as SPCS nurse and analysing behaviours ............................................................................................................ 217
Scatterplot for relationship between years of experience as SPCS nurse and counselling behaviours .......................................................................................................... 219
Scatterplot for relationship between years of experience as SPCS nurse and responding behaviours .......................................................................................................... 221
Table M1 Multiple correlation matrix for all regression models (n = 110) ...... 223
Scatterplot for frequency of analysing behaviours model ................................ 225
Scatterplot for frequency of counselling behaviours model ............................. 227
Scatterplot for frequency of responding behaviours model ............................ 229
Table Q1 Sequential backward stepwise regression models for analysing behaviours (n = 110) ............................................................................................................. 231
Table R1 Sequential backward stepwise regression models for counselling behaviours (n = 110) ............................................................................................................. 233
Table S1 Sequential backward stepwise regression models for responding behaviours (n = 110) ............................................................................................................. 235
x Nurses’ advocacy behaviours and the factors influencing these behaviours
List of Figures
Figure 2-1. The BCW. ................................................................................................ 15
Figure 4-1. Procedures for the development of the NACC questionnaire. ................. 47
Figure 6-1. Flowchart of survey participants. ............................................................ 82
Nurses’ advocacy behaviours and the factors influencing these behaviours xi
List of Tables
Table 2.1. The 14 domains of the refined TDF linked to the components of the COM-B model .............................................................................................. 16
Table 3.1. The terms used in the search strategy ....................................................... 22
Table 3.2. Review Matrix .......................................................................................... 24
Table 4.1. Categorisation of nursing advocacy behaviours ...................................... 50
Table 4.2. Measurement scales for the DIBQ ............................................................ 52
Table 4.3. Initial NACC questionnaire items developed from multiple sources ........ 55
Table 4.4. Measurement scales for DOCNAB subscale ............................................. 59
Table 4.5. Amendment report outlining changes and rationales after content and face validity testing of NACC questionnaire ......................................... 65
Table 6.1. Demographic characteristics of the survey respondents ........................... 84
Table 6.2. Descriptive statistics for all 18 DIBQ-based domains of the NACC questionnaire ................................................................................................ 87
Table 6.3 Frequency of behaviours by nurses when advocating for patient referrals to SPCS in the past year ................................................................ 89
Table 6.4. Frequency of cancer nurses advocating for patient referrals to SPCS at specific time points .................................................................................. 92
Table 6.5 Descriptive statistics for total capabilities, total opportunities and motivations scores (n = 110) ........................................................................ 94
Table 6.6. Correlations between the frequency of nursing advocacy behaviours and selected potential behavioural determinants and demographic factors (n = 110) ........................................................................................... 94
Table 6.7. The relationships between selected demographic factors and frequency of nursing advocacy behaviours (analysing, counselling and responding) (n = 110) .................................................................................. 97
Table 6.8. The initial and final models for predictors of frequency for analysing behaviours (n = 110) .................................................................................. 101
Table 6.9. The initial and final models for predictors of frequency for counselling behaviours (n = 110) ............................................................... 102
Table 6.10. The initial and final models for predictors of frequency for responding behaviours (n = 110) ............................................................... 103
xii Nurses’ advocacy behaviours and the factors influencing these behaviours
List of Abbreviations
Abbreviated form Full name ABS Australian Bureau of StatisticsANOVA Analysis of VarianceAPPC Advocacy in Procedural Pain Care ASGC-RA Australian Standard Geographical Classification – Remoteness
Areas BCW Behaviour Change Wheel CAMO Canadian Association of Medical OncologistsCARO Canadian Association of Radiation OncologistsCI Confidence IntervalCNSA Cancer Nurses Society of AustraliaCOM-B model Capability Opportunity Motivation – Behavioural modelCSSO Canadian Society of Surgical OncologyCVI Content Validity IndexCVR Content Validity RatioDIBQ Determinants of Implementation Behaviour Questionnaire DOCNAB Determinants of Cancer Nursing Advocacy Behaviours ENABLE II RCT Educate, Nurture, Advise, Before Life Ends II Randomised Clinical
Trial GP General PractitionerHSANZ Haematology Society of Australia and New ZealandMOGA Medical Oncology Group of AustraliaNAA-PCR Nursing Advocacy Actions taken to facilitate Palliative Care
Referrals NACC Nursing Advocacy in Cancer Care NHMRC National Health and Medical Research CouncilPRISMA Preferred Reporting Items for Systematic Reviews and Meta-
Analyses QUT Queensland University of TechnologyRA Remoteness AreaRCT Randomised Control TrialSD Standard DeviationSE Standard Error SPCS Specialist Palliative Care ServicesTDF Theoretical Domains Framework VAS Visual Analog ScaleVIF Variance Inflation FactorUHREC University Human Research Ethics Committee
Nurses’ advocacy behaviours and the factors influencing these behaviours xiii
Statement of Original Authorship
The work contained in this thesis has not been previously submitted to meet
requirements for an award at this or any other higher education institution. To the
best of my knowledge and belief, the thesis contains no material previously
published or written by another person except where due reference is made.
Signature: QUT Verified Signature
Date: ____29.03.2018____________
xiv Nurses’ advocacy behaviours and the factors influencing these behaviours
Acknowledgements
This Master of Applied Science (Research) degree would not have been
possible without the assistance of the following people. First and foremost, I would
like to thank my supervisors, Professor Patsy Yates, Professor Raymond Chan and
Dr John Rosenberg for their ongoing support, encouragement and copious amounts
of time given over the last four years in assisting me to complete this research and
thesis. I have felt fortunate to have been advised by supervisors who are world-class
researchers, whom I admire for their drive, vision and achievements in their fields of
nursing. I really appreciate their guidance and expert advice throughout this
MAppSci study and my research training during candidature.
I would also like to thank Lee Jones (Biostatistician, QUT) for her statistical
advice. Professional editor, [Dr Gillian Ray-Barruel], provided copy-editing and
proofreading services, according to the guidelines laid out in the university-endorsed
national ‘Guidelines for editing research theses’.
During Stage One of this study, three internationally renowned academics in
the fields of nursing advocacy, cancer nursing and palliative care, and three highly
experienced oncology/haematology nurses generously gave their time and expertise
towards the content validity phase of this study. In addition, six postgraduate nursing
students from QUT kindly chose to assist with the face validity phase of this study.
Without their enthusiasm for this study and willingness to assist with reviewing and
providing feedback on the survey instrument and its constructs, this research would
not have been possible.
I would also like to acknowledge Tracy Glynn, Nicole Gavin and Gillian
Nasato, Cancer Care Services, Royal Brisbane and Women’s Hospital (RBWH) for
supporting me throughout this thesis and approving periods of annual and long
service leave to enable me to complete this research.
I would like to thank Professor Joan Webster (Nursing Director, Research,
RBWH) for her ongoing support, encouragement and troubleshooting advice, ever
since I began studying research and working in the Nursing and Midwifery Research
Nurses’ advocacy behaviours and the factors influencing these behaviours xv
Centre. To my work colleagues, thanks for providing a listening ear when it was
needed and for celebrating the highs and lows of this research study with me.
Finally, I could not have completed this research without the ongoing support
of my family and friends. To my friends, particularly Annaliese, Natalie, Chris, Mel,
Nicole, Julie and Elise, thank you for your constant encouragement and for tolerating
me throughout the challenging times of this study. To my parents, Daryl and Lyn,
sisters, Emma and Kate, grandparents, June and Ralph, and aunty, Glenda, thank you
for all your love, support, patience and understanding over the last four years. Words
cannot adequately express how much your support has meant to me. Last but
certainly not least, to my dogs, Fifi and Bruno, for their cuddles and companionship
during many hours spent in front of the computer.
Chapter 1: Introduction 1
Introduction
1.1 BACKGROUND AND THE SCOPE OF THE PROBLEM
The number of people diagnosed with cancer each year is projected to rise to
23.6 million cases worldwide by 2030, an increase of 68% from 2012 (Bray, Jemal,
Grey, Ferlay, & Forman, 2012). Combined with advances in screening and treatment,
these improvements mean that the number of people living with cancer is increasing
globally (Torre et al., 2015). While a growing number of people are diagnosed early
and will be cured from their disease, a notable proportion of people with cancer will
be diagnosed with or develop advanced cancer which ultimately progresses and leads
to death.
The disease trajectory for people living with advanced cancer has changed
significantly in recent years (Park & Rosenstein, 2014). Five-year survival rates
indicate that more people are living with advanced cancer for longer periods of time
(Siegel, Ma, Zou, & Jemal, 2014). Importantly, a multitude of distressing symptoms
can be experienced by people with advanced cancer (such as pain, fatigue, sleep
disturbance, depression and breathlessness) which, unless alleviated, can cause
significant distress for the individual and their family (Higginson & Costantini,
2008). Thus, optimising quality of life, improving symptom management and
alleviating distress are important goals of care for this population.
Early referral to Specialist Palliative Care Services (SPCS) can improve
symptom management (Bakitas et al., 2009; Higginson et al., 2014; Temel et al.,
2010), quality of life (Ferrell et al., 2015; Grudzen et al., 2016; Temel et al., 2010;
Zimmermann et al., 2014) and in some cases even prolong survival for patients with
advanced cancer (Bakitas et al., 2015; Temel et al., 2010). SPCS aim to improve the
quality of life of those living with life-limiting illnesses and their families by
providing treatment to alleviate any psychosocial, spiritual or physical distress
(World Health Organization, 2017). Palliative care was traditionally associated with
the provision of end-of-life care. However, these days this specialty has widened its
scope of practice to provide support for individuals and their families at earlier stages
of the disease (Greer, Jackson, Meier, & Temel, 2013).
2 Chapter 1: Introduction
In addition, SPCS aim to assist in treatment decision-making by ensuring
patients’ care preferences and families’ concerns are addressed. Nurses have a
critical role to play as the primary provider of round-the-clock clinical care, assessing
and managing physical, psychological, social and spiritual issues experienced by
patients and their families. Nurses communicate patients’ concerns to the
multidisciplinary team and escalate matters to physicians when necessary, in order to
deliver care that is in accordance with their patients’ treatment preferences and hopes
for the future (Gabriel, 2008).
Nevertheless, many studies have reported that the multidisciplinary oncology
team predominantly make referrals to SPCS for end-of-life care, rather than referring
patients earlier in the disease trajectory (Dalal et al., 2011; Reville, Reifsnyder,
McGuire, Kaiser, & Santana, 2013; Waller et al., 2008; Weissman & Meier, 2011).
Similarly, studies set in the haematology in-patient setting report that referrals to
SPCS are infrequent (LeBlanc & El-Jawahri, 2015), occurring during the terminal
phases of disease or not at all. The timing of these referral decisions can determine
whether patients receive care that meets their immediate needs, as well as their goals
and hopes for the future. Late referrals restrict the amount of time available to SPCS
to alleviate distressing symptoms and improve the quality of life of those living with
advanced cancer and their families. Nevertheless, the decision-making process for
healthcare professionals considering patient referrals to SPCS is poorly understood,
especially in the acute cancer care setting. To date, the clinical, professional and
health system factors that influence this critical decision-making process have not
been clearly articulated in the literature (Broom, Kirby, & Good, 2012). More
research on this topic is warranted, to establish the factors influencing this decision-
making process in the acute setting.
The benefits of early integration of palliative care for those with advanced
cancer are well documented throughout the literature (Ferrell et al., 2016; Johnson,
Girgis, Paul, & Currow, 2008; A. Waller, Girgis, Currow, Lecathelinais, & Palliative
Care Research Program, 2008; Weissman & Meier, 2011). In a study by Temel et al.
(2010), the introduction of palliative care combined with standard oncology care for
newly diagnosed ambulatory metastatic non-small cell lung cancer patients
significantly improved their quality of life, mood and period of survival, when
compared to the control group. Although there is growing literature supporting early
Chapter 1: Introduction 3
referrals, there are a range of factors that can influence the complex decision-making
process associated with the referral of patients with advanced cancer to SPCS (Ward,
Agar, & Koczwara, 2009). Reaching an agreement within the multidisciplinary team
on this complex decision can be perplexing for all healthcare professionals involved,
from personal and professional perspectives (Broom et al., 2012).
The primary role of healthcare professionals is to provide comprehensive care
that meets the needs of each individual patient and their family. To fulfil this duty of
care, the treating multidisciplinary team often needs to seek the advice of other
clinical specialists to manage the complex care needs of patients with advanced
cancer in a timely and appropriate manner. A referral to SPCS provides access to a
multidisciplinary team who aims to deliver care that is tailored to the individual
needs of the patient and their family (Broom et al., 2012). It is critical that the factors
influencing the referral decision-making process to SPCS are well understood, as
there are significant repercussions for patients, families and healthcare professionals
when inadequate referral practices occur (Broom et al., 2012).
1.2 PURPOSE
The purpose of the study was to examine the actions cancer nurses take to
advocate for the referral of patients with cancer to SPCS, as well as the individual
and organisational factors that influence these actions.
1.3 CONTEXT
The factors that affect the referral decision-making process to SPCS differ
greatly depending on the context. In this study, context refers to the acute cancer care
environment in which healthcare professionals initiate patient referrals to SPCS
where needed. The following section briefly explores the influence of context on the
role of healthcare professionals practising in Australia.
Over time, SPCS has evolved from solely providing hospice or end-of-life care
to focusing on improving the quality of life of those living with life-limiting illnesses
earlier in the disease trajectory (Maltoni et al., 2016; World Health Organization,
2017). In contrast, care delivery within the acute care setting is often disease-
4 Chapter 1: Introduction
orientated (McCance, McCormack, & Dewing, 2011), focused on providing patients
with curative treatments (Smith et al., 2010). There have been difficulties integrating
these two approaches to patient care in the Australian healthcare setting which has
affected collaborations between acute cancer care and SPCS (Johnson, Paul, Girgis,
Adams, & Currow, 2011; LeBlanc & El-Jawahri, 2015).
Varying levels of healthcare resources have also affected palliative care
provision in Australia. Large metropolitan government-funded hospitals generally
provide dedicated SPCS (Johnson et al., 2008; Johnson et al., 2011; Ward et al.,
2009). Compared to many other countries, SPCS are generally widely available
across Australia and freely provided in tertiary public hospitals (Johnson et al.,
2011). However, the level and quality of SPCS varies across the system, with some
facilities only providing access to an external or consultancy service (WA
Department of Health, 2017). Such varying levels of access to this important
healthcare resource influences the practices of healthcare professionals (Johnson et
al., 2008; Johnson et al., 2011).
The role of the multidisciplinary team in the acute cancer care setting is
similarly variable. In Australia, multidisciplinary models of care generally aim to
provide needs-based patient care. These goals of care can be difficult to achieve due
to the time constraints and high patient turnover that often occurs in the acute care
setting. Nevertheless, when the treating team is unable to adequately respond to
patient needs, healthcare professionals have a responsibility to consider referral to
SPCS (Broom et al., 2012). All healthcare professionals contribute to the palliative
care referral decision-making process by assessing the complexity and multiplicity of
patient and family needs and care preferences. If patients are found to have a high
symptom burden, allied health professionals and nurses have a duty of care to act as
the patient advocate and facilitate referrals to SPCS. However, in most acute care
settings, only physicians, nurse practitioners and/or Clinical Nurse Consultants (with
or without specialist training) have the authority to formally initiate referrals to SPCS
(Johnson et al., 2011; Olivia Newton-John Cancer Wellness & Research Centre,
2017; WA Department of Health, 2017).
Few studies describe the role of nurses and nurse practitioners in initiating or
advocating for referrals to SPCS in the acute cancer care setting (Bakitas, Lyons,
Hegel, & Ahles, 2013; Fadul et al., 2009; Pavlish & Ceronsky, 2007, 2009).
Chapter 1: Introduction 5
Compared to other healthcare professionals, nurses spend the most time with patients
across their cancer trajectory (Gosselin-Acomb, Schneider, Clough, & Veenstra,
2007; Mahfudh, 2011), which provides unique opportunities to understand the needs
of patients and their families (Gosselin-Acomb et al., 2007). Therefore, gaining an
understanding of the role and perspectives of nurses in the referral decision-making
process is important and will inform future interventions for enabling early referrals
to SPCS where appropriate.
1.4 SIGNIFICANCE
In 2008, approximately 12.7 million cases of cancer occurred globally, which
is projected to rise to 23.6 million cases by 2030 (Bray et al., 2012). Combined with
a growing aging population (Jemal et al., 2011) this places considerable burden on
individuals, families and the healthcare system (Bray et al., 2012). Advances in early
detection and cancer treatments have resulted in more people living longer with
advanced cancer (Torre et al., 2015). The complexity and severity of needs
experienced by patients, caregivers and families living with advanced cancer can
cause significant distress if inadequate support is provided (Broom et al., 2012;
Higginson & Costantini, 2008). Early referral to SPCS can improve symptom
management, quality of life (Bakitas et al., 2009; Ferrell et al., 2016; Temel et al.,
2010) and patient satisfaction (Gade et al., 2008), as well as reduce caregiver
(Dionne-Odom et al., 2015; Meyers et al., 2011). In some cases, studies have
reported that early referral has optimised the timing of final chemotherapy regimens
(Greer et al., 2012), reduced aggressive treatment at the end of life (Temel et al.,
2010), resulting in more timely hospice admissions (Greer et al., 2012) and
prolonged survival (Bakitas et al., 2015; Temel et al., 2010).
Despite this growing evidence of the multiple benefits of early referral to
palliative care, many healthcare professionals refer patients with advanced cancer to
SPCS late in the disease trajectory (Dalal et al., 2011; Manitta, Philip, & Cole-
Sinclair; Reville et al., 2013; Waller et al., 2008; Weissman & Meier, 2011) or not at
all (Broom, Kirby, Good, Wootton, & Adams, 2012; LeBlanc & El-Jawahri, 2015).
Delayed or non-referrals result in significant costs, including reduced caregiver and
family wellbeing (Temel et al., 2011); increased likelihood of patients and families
6 Chapter 1: Introduction
feeling insufficiently prepared for the end of life (McNamara & Rosenwax, 2010);
and suboptimal symptom management, increasing distress in patients, families and
healthcare professionals (Greer et al., 2012). While a knowledge translation problem
exists (Bakitas et al., 2013; Johnson et al., 2011; LeBlanc & El-Jawahri, 2015; Ward,
Agar, & Koczwara, 2009), limited literature has addressed this problem. A clear
understanding of the factors that influence the referral decision-making process is
needed (Broom et al., 2012) in order to develop targeted interventions that aim to
optimise referral practices between oncology, haematology and SPCS (Broom &
Adams, 2010; Ferrell et al., 2016).
1.5 SCOPE OF THIS STUDY
This study focuses on expanding our understanding of the factors that influence
registered nurses’ referral decision-making process to SPCS for hospitalised patients
with advanced cancer. To explore the research question, this study was divided into
two stages: (i) the development of a questionnaire, guided by the findings of an
integrative review, and (ii) a cross-sectional survey.
Stage One
The first stage focuses on establishing the factors that influence a poorly
understood problem: the referral decision-making process to SPCS. To date, it is not
clear what influences a healthcare professional to refer a patient with advanced
cancer to SPCS (Broom et al., 2012). Complementary theoretical frameworks were
chosen (Michie et al., 2005; Michie, van Stralen, & West, 2011) to guide the
development of an integrative review, problem analysis and identification of
behaviour change processes. The findings of this review provided a context for the
main study and informed the development of a questionnaire for nurses who provide
care to patients with cancer in the in-patient setting.
Stage Two
Stage Two involved a cross-sectional survey of the membership of two
Australian professional organisations (Cancer Nurses Society of Australia [CNSA]
Chapter 1: Introduction 7
and Haematology Society of Australia and New Zealand [HSANZ] Nurses Group) to
describe oncology and haematology nurses’ contributions to the referral decision-
making process. The survey aimed to identify nurses’ perceptions of the specific
actions they take to facilitate the referral of patients with cancer to SPCS in the in-
patient setting and the organisational and individual factors that influence these
actions.
1.6 STUDY DEFINITIONS
Throughout this thesis, several terms were repeatedly used. Definitions of
frequently used terms have been provided below to enhance clarity for the reader.
The definitions of terms include:
Advanced cancer
For patients with solid tumours, advanced cancer is recognised as metastatic
disease (National Cancer Institute, 2018b) and/or when locally advanced disease is
not amenable to cure (American Cancer Society, 2016). There is no clear definition
for advanced disease in the haematology setting (Button, Chan, Chambers, Butler, &
Yates, 2016). However, progressive or relapsed disease is considered a common
characteristic of people with a haematologic malignancy towards the end of life
(Button et al., 2016; LeBlanc & El-Jawahri, 2015). In this study, patients with
advanced cancer were those with metastatic, progressive or relapsed disease and/or
when locally advanced disease was not amenable to cure.
End of life
There is no universal definition for the ‘end of life’. This term was used
throughout this thesis to refer to the last few days to hours of a person’s life
(Australian Commission on Safety and Quality in Health Care, 2015).
End-of-life care
Throughout this thesis, ‘end-of-life care’ refers to the care provided to adults
with advanced cancer who are likely to be within their last days to weeks of life
8 Chapter 1: Introduction
(Australian Commission on Safety and Quality in Health Care, 2015). This includes
the care provided to people whose death is imminent (i.e. expected to die within a
few hours). End-of-life care refers to the provision of care based on the physical,
emotional, cultural, psychosocial and spiritual needs of the dying person, their family
and/or support network (Australian Commission on Safety and Quality in Health
Care, 2015). The unique needs of the dying person and their family/support network
should be re-assessed on an ongoing basis to determine their goals, values, priorities
and preferences at this time.
Hospice care
Hospice care is defined differently, depending on the geographical location of
where the nursing care is being provided. In the United Kingdom, patients with
advanced cancer may be referred to a hospice at any stage - from the time they are
diagnosed with a terminal illness, to the end of their life (National Health Service,
2014). Some patients attend the hospice healthcare facility to receive support with
symptom management or emotional support and then return home (National Health
Service, 2014). However, the National Cancer Institute states that in the USA, most
insurance plans, including Medicare, require medical certification that the patient is
expected to live for six months or less, prior to the commencement of hospice care
(National Cancer Institute, 2018a). Hospice care in the USA can be provided in the
home, hospice centre, hospital or skilled nursing facility (National Cancer Institute,
2018a). Similarly, hospice care in Australia typically refers to free-standing specialist
institutions or organisations that provide end-of-life care as part of their total
services, such as hospitals or home-based hospice care services.
Integration
There is currently no global consensus on the meaning of ‘integration’ (Hui et
al., 2015). In this study, ‘integration’ refers to the degree of collaboration between
cancer and SPCS (Hui et al., 2015). Clinical, administration, research and education
factors all contribute to the level of integration between cancer and SPCS (Hui et al.,
2015). Specific indicators of integration between services include the availability,
type, acceptance criteria of and geographical proximity to SPCS (Hui et al., 2015).
Chapter 1: Introduction 9
Other clinical and education indicators include: the practice of routine symptom
screening; adoption of referral practice guidelines; provision of a palliative care
service embedded within cancer care services; collaboration between teams;
physician competence in palliative care; and an oncology program that prioritises
junior physician rotation in SPCS (Hui et al., 2015). Research activity in palliative
care, participation in advocacy or public awareness about palliative care, adequate
organisation funding and leadership support for palliative care are also considered
indicators of integration with cancer services (Hui et al., 2015). Throughout this
thesis, the level of integration was measured using the indicators of integration
(clinical, administration, research and education factors) as defined by Hui et al.
(2015).
Nursing Advocacy
In general, nursing advocacy refers to any action taken by a nurse to promote
and safeguard the well-being and interests of his/her patients or clients (Choi, 2015).
Examples of nursing advocacy actions include ensuring patients are aware of their
healthcare rights and/or have access to information to make informed healthcare
decisions. Nursing advocacy is a series of behaviours that can be considered across
four stages: (1) assessing the need for patient advocacy, (2) identifying the goals of
patient advocacy, (3) planning and implementing advocacy actions, and (4)
evaluating the outcomes of patient advocacy (Choi, 2015). In this study, nursing
advocacy behaviours that facilitate patient referrals to SPCS were measured using the
Nursing Advocacy in Cancer Care (NACC) questionnaire.
Palliative care
Throughout this study, ‘palliative care’ encompasses the provision of
supportive, needs-based care that aims to maximise comfort, dignity and quality of
life for individuals and their families (World Health Organization, 2017). Palliative
care includes early identification, assessment and treatment of psychosocial, spiritual
or physical distress experienced by patients or their families (World Health
Organization, 2017). Palliative care is provided by healthcare professionals to those
10 Chapter 1: Introduction
with life-limiting illnesses at any stage of the disease trajectory (World Health
Organization, 2017).
Physician
A person qualified to practise medicine. The terminology and meaning of this
role varies around the world. This term was used throughout this thesis to refer to all
medical doctors.
Referral Behaviours
Throughout this study, ‘referral behaviours’ refers to the act of initiating a
referral to SPCS.
Specialist Palliative Care Services (SPCS)
In this context, SPCS provide direct care to patients who have a life-limiting
illness and complex care needs (Johnson et al., 2008; World Health Organization,
2017). The service composition is variable - it may be uni-disciplinary (i.e., nurses
only) (Johnson et al., 2011) or a multidisciplinary (including nurses, physicians and
sometimes social workers, counsellors, pastoral care or other allied health
professionals) team who have completed specialist palliative care training (Finlay,
2001; Palliative Care Australia, 2016). Members of the team provide palliative care
services, which include symptom management, patient advocacy and facilitating
treatment decision-making and prognostic discussions between the patient, their
family and the healthcare team.
1.7 THESIS OUTLINE
This thesis contains seven chapters. Each chapter focuses on a different stage
of the research process. Chapter One introduces the research question, background,
context and purpose of the study. Definitions of the key concepts are provided, as
well as an outline of the thesis. Chapter Two describes the behaviour change
frameworks that guided the conceptual development of each phase of this research
study. Chapter Three reviews the literature on the factors that influence the referral
Chapter 1: Introduction 11
decision-making process to SPCS in the acute cancer setting. The integrative review
highlights the knowledge gaps that exist and outlines the implications for research
and clinical practice. Chapter Four describes the methods used in Stage One of this
study to develop a survey instrument to measure the actions taken by cancer nurses
to facilitate referrals to SPCS and the factors that influence these actions. This
chapter also documents the results of Stage One, providing preliminary evidence of
the validity of the survey instrument.
Chapter Five presents the research methodology proposed for Stage Two of
this study and the research questions guiding descriptive, bivariate and multivariable
analysis. This chapter specifically focuses on methodology, research design,
participants, survey instrument, procedure and timeline, analysis, ethics and
limitations for the cross-sectional study. Chapter Six presents the results from Stage
Two of this study. The factors affecting the referral decision-making process to
SPCS in the in-patient setting are reported, as identified by a national survey of
cancer nurses. Chapter Seven describes a comprehensive analysis of the results and
presents an interpretation of the findings of this study. This chapter provides
recommendations for future research, implications for practice, limitations and
conclusions of this study.
Chapter 2: Conceptual Framework 13
Conceptual Framework
2.1 INTRODUCTION
Early referral to SPCS has been shown to significantly improve the quality of
life of those living with advanced cancer. Many studies identify that healthcare
professionals predominantly make referrals to SPCS for care at the end of life,
highlighting a knowledge translation problem. A behaviour change intervention has
the potential to overcome the chasm that exists between evidence and practice in this
field. Due to the limited research in this field and numerous factors that could
influence the referral decision-making process to SPCS, an overarching framework
was needed to inform the research process.
This chapter provides justification for selecting constructs from three
complementary theoretical frameworks (Theoretical Domains Framework (TDF),
Capability Opportunity Motivation–Behaviour (COM-B) model and Behaviour
Change Wheel (BCW)) to inform the conceptual framework that guided all stages of
this study. In this chapter, the challenges associated with facilitating behaviour
change in the healthcare setting were considered by undertaking a critical review of
relevant literature. The key components of the refined TDF, COM-B model and BCW
were defined, and their complementary role to inform the conceptual framework to
guide problem analysis for this study was discussed. Finally, clear justifications were
made to outline why these complementary frameworks were selected to guide the
identification of factors that influence the referral decision-making process to SPCS
for patients with advanced cancer.
2.2 FACILITATING BEHAVIOUR CHANGE IN THE HEALTHCARE SETTING
Changing the behaviours of healthcare professionals is complex (Michie,
Atkins, & West, 2014). To date, behaviour change interventions have had
inconsistent results in improving the translation of evidence into practice (Davis,
Campbell, Hildon, Hobbs, & Michie, 2015; Michie, 2008). While some behaviour
change interventions have had a positive impact at individual and population levels
14 Chapter 2: Conceptual Framework
(Albarracín et al., 2005; Asaria, Chisholm, Mathers, Ezzati, & Beaglehole, 2007;
Forbes, Jepson, & Martin‐Hirsch, 2002; Michie & West, 2013), in many cases the
agents responsible for change were not identified (Michie, 2008). Thus, no ‘gold
standard’ criteria exists to increase the likelihood of designing an effective behaviour
change intervention (Davis et al., 2015).
Some evidence suggests behaviour change interventions founded on theory are
more effective than those based on intuition (Albarracín et al., 2005; Noar &
Zimmerman, 2005). Interventions informed by researcher intuition can fail to
comprehensively address the behaviour of interest, effectively limiting their ability to
design a conceptually coherent solution to the problem at hand (Michie et al., 2005).
Theories in behavioural science have enriched our understanding of behaviour and its
behavioural determinants (Michie et al., 2014). Understanding how and why people
choose to change their behaviours is essential when designing knowledge translation
interventions (Davis et al., 2015; Michie et al., 2014). However, a plethora of
behavioural theories exist, making it difficult to determine which theory is best suited
to guide a behaviour change study (Michie et al., 2005). There is also a lack of
guidance on how to select appropriate behaviour change theories and apply them to
guide intervention design (Michie, 2008). If theories are applied sub-optimally, they
can limit the parameters for problem analysis, affect intervention design and restrict
intervention evaluation (Davis et al., 2015).
In their attempt to make behaviour change theories more accessible to
clinicians and researchers, Michie et al. (2011) evaluated 19 existing behaviour
change frameworks for their comprehensiveness, conceptual coherence and whether
a connection existed with an overarching model of behaviour. None of the existing
frameworks covered all intervention functions and the majority lacked conceptual
coherence (Michie et al., 2011). The review highlighted the need for a framework
that provided a comprehensive, systematic, theory-driven approach to each step of
designing a behaviour change intervention, including implementation (Michie et al.,
2011). Thus, Michie et al. (2011) developed the BCW to provide a stepwise approach
to applying theory from problem analysis to intervention implementation.
Chapter 2: Conceptual Framework 15
2.3 THE BEHAVIOUR CHANGE WHEEL (BCW)
The BCW has three layers: the innermost layer is the behaviour of interest and
its interacting components (known as the COM-B model); the middle layer is made
up of nine intervention functions; and the outermost layer consists of seven types of
policies that can be selected to instigate change (Michie et al., 2011). The COM-B
model divides into six components: capability is made up of psychological and
physical capability; opportunity comprises of social and physical opportunity;
motivation consists of reflective and automatic motivation (Cane, O’Connor, &
Michie, 2012). Figure 2-1 shows the BCW.
Figure 2-1. The BCW.
From “The behaviour change wheel: A new method for characterising and designing behaviour change interventions,” by Michie, et al., 2011, Implementation Science, 6, p. 1-11. Copyright [2011] by BioMed Central Ltd. Reproduced with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).
At its centre lies the refined TDF domains linked to the COM-B components
(refer to Table 2.1). The refined TDF integrates numerous behaviour change theories
16 Chapter 2: Conceptual Framework
to guide behavioural analysis and intervention design (Cane et al., 2012). Together,
the refined TDF, COM-B model and BCW provide a complementary approach for
analysing behaviour and designing a targeted behaviour change intervention (Cane et
al., 2012; Michie et al., 2011). These complementary frameworks are not formulas
for effective behaviour change; rather they provide a method for examining current
understanding of a behaviour and expand on that understanding to develop a
contextually-bound intervention (Michie et al., 2014). Table 2.1 shows the refined
TDF domains linked to the COM-B components.
Table 2.1.
The 14 domains of the refined TDF linked to the components of the COM-B model
COM-B components TDF domains
Capability Psychological Knowledge
Cognitive and Interpersonal Skills
Memory, Attention and Decision Processes
Behaviour Regulation
Physical Physical Skills
Opportunity Social Social Influences
Physical Environmental Context and Resources
Motivation Reflective Social/Professional Role & Identity
Beliefs about Capabilities
Optimism
Beliefs about Consequences
Intentions
Goals
Automatic Reinforcement
Emotion
From “Validation of the theoretical domains framework for use in behaviour change and implementation research,” by J. Cane, D. O’Connor, and S. Michie, 2012, Implementation Science, 7, p. 15. Copyright [2012] by BioMed Central Ltd. Reprinted with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).
The complex nature of the behaviours related to the referral decision-making
process to SPCS requires a multifaceted, stepwise approach from problem analysis to
intervention design. The refined TDF (Cane et al., 2012), COM-B model and BCW
(Michie et al., 2011) were chosen as they provide complementary frameworks that
Chapter 2: Conceptual Framework 17
are relevant to the purposes of this study. The refined TDF (Cane et al., 2012) was
selected to guide problem analysis, due to its comprehensive approach to
understanding complex behaviours. The multiple elements of the refined TDF were
subsequently mapped by Cane et al. (2012) against higher level domains that
provided a broader, more parsimonious categorisation of factors that are likely to
influence behaviour change (refer to Table 2.1). Cane et al. (2012) named this
categorisation the COM-B model. The COM-B model informed the development of
the BCW (Michie et al., 2011), resulting in a new approach to inform the design of
behaviour change interventions. The following section outlines the rationale for a
behaviour change theoretical approach in the context of understanding referral
practices and provides a critical appraisal of the refined TDF, COM-B model and
BCW (Cane et al., 2012; Michie et al., 2014; Michie et al., 2011).
The refined TDF incorporates 14 domains and 84 theoretical constructs to
comprehensively assess any behaviour and its potential behavioural determinants
(Cane et al., 2012). The refined TDF has several strengths (Cane et al., 2012). Firstly,
it has been used to assess implementation problems across several healthcare settings
(Atkins & Michie, 2013; Fuller et al., 2014; Huijg et al., 2013; Johnston, Young,
Grimmer, Antic, & Frith, 2013). Secondly, this validated consensus-driven
framework integrates a broad range of behaviour change theories to ensure a
multifaceted systematic approach to problem analysis (Cane et al., 2012; Michie et
al., 2005). Thirdly, the framework promotes the identification of the beliefs of
individuals, which can indicate key motivators of behaviour change (Cane et al.,
2012). This framework is also evidence-based, as it has incorporated
recommendations from psychological research on behaviour change (Abraham,
Kelly, West, & Michie, 2009; Michie et al., 2005; NICE, 2007).
Nevertheless, the refined TDF is limited by the constructs upon which it is built
(Cane et al., 2012). The constructs of the refined TDF were based on the original
TDF, which were extensive but do not provide coverage of all behaviour change
theories (Cane et al., 2012). In addition, a number of theoretical constructs were
repeated across more than one domain (Cane et al., 2012). Although these constructs
were relevant to their assigned domains, such repetition could make it difficult to
apply the refined TDF during data analysis.
18 Chapter 2: Conceptual Framework
Despite these limitations, the refined TDF is designed to guide the first steps
towards problem analysis and designing a behaviour change intervention (Michie et
al., 2014). The COM-B model complements the TDF-guided behavioural analysis, as
it helps to identify how capability, opportunity and motivation interact together to
generate behaviour (Michie et al., 2011). Together, the COM-B model and refined
TDF can be applied to identify which domains are likely to influence behaviour
change in context (Cane et al., 2012; Michie et al., 2011). The BCW links the
outcomes of this behavioural analysis to relevant intervention functions (such as
education and training) and policy categories (such as guidelines and service
provision) to ensure the intervention design responds to the behavioural determinants
identified (Michie et al., 2014; Michie et al., 2011). The COM-B model makes the
best use of the evidence available. However, it is not a substitute for a detailed
understanding of the target behaviour (Michie et al., 2011). The COM-B model has
been applied successfully to analyse behaviours associated with health assessments
for young children (Alexander, Brijnath, & Mazza, 2014) and medication adherence
(Jackson, Eliasson, Barber, & Weinman, 2014), but not yet in the context of the acute
cancer care setting. Each of the TDF domains sits within the COM-B model,
collectively demonstrating how capability, opportunity and motivation interact
together to generate behaviour.
Further studies are needed to pilot test the feasibility of using the COM-B
model to guide the conceptualisation of the target behaviour and its behavioural
determinants within the healthcare setting (Michie et al., 2011). Such evaluations
would help determine whether this method is useful to healthcare professionals and
researchers in different contexts. Due to a limited number of studies (Mummah,
Mathur, King, Gardner, & Sutton, 2016; Sinnott et al., 2015), it is unknown whether
the COM-B model is able to effectively describe a range of healthcare professional
behaviours in various contexts. Furthermore, it remains to be seen whether this
model informs the design of more effective behaviour change interventions than
those based on intuition.
The BCW has several strengths. The BCW was informed by a literature review
(Michie et al., 2011) and addresses the need for a framework that systematically
integrates relevant theories and cohesively links each step in intervention design. The
BCW has been applied by two behaviour change experts (Michie et al., 2011) to
Chapter 2: Conceptual Framework 19
characterise two health-related behaviours (NICE, 2006; UK Department of Health,
2010) with substantial inter-rater agreement. Pilot studies (Mummah et al., 2016;
Sinnott et al., 2015) have also found BCW-driven interventions were acceptable,
user-friendly and useful for addressing complex problems in the clinical setting.
Nevertheless, the BCW has some limitations. To date, the BCW has undergone
limited feasibility testing to determine its acceptability to healthcare professionals
and researchers (Mummah et al., 2016; Sinnott et al., 2015). It is unknown whether
this framework can guide the development of effective interventions for the acute
cancer care setting. Furthermore, the content of the BCW was based solely on the
findings of one systematic review of behaviour change frameworks and/or
intervention functions (Michie et al., 2011). It is possible this review inadvertently
missed key frameworks, potentially restricting the conceptualisation of the
framework and its application within practice (Michie et al., 2011). Similarly, a large
number of potential behaviour change interventions exist, and it is impossible to
include them all in the BCW (Michie et al., 2011). The conceptualisation of the BCW
was informed by the judgement of behaviour change experts, who acknowledge that
there is more than one way to classify intervention functions and policies (Michie et
al., 2011).
2.4 APPLYING THE FRAMEWORKS TO THE BEHAVIOUR OF INTEREST
Together, the refined TDF, COM-B model and BCW are designed to be applied
to any behaviour in any setting, at an individual, group or population level (Cane et
al., 2012; Michie et al., 2014). In this study, the behaviours of interest are the referral
behaviours of healthcare professionals that contribute to the referral decision-making
process to SPCS for hospitalised patients with advanced cancer. These behaviours
exist within a system where competing or contributing behaviours affect each
another (Barker, Atkins, & de Lusignan, 2016; Michie et al., 2014).
This study focuses on the first step of facilitating behaviour change —
comprehensive problem analysis, guided by the refined TDF and COM-B model.
These two frameworks were simultaneously applied to ensure a comprehensive
approach was employed when describing healthcare professionals’ referral
20 Chapter 2: Conceptual Framework
behaviours in the palliative care referral decision-making process and the factors that
influence these behaviours. The theories underpinning the refined TDF and COM-B
model provided a theoretical understanding of how the referral behaviours were
generated and how clinical, professional and health system factors influence these
behaviours. The BCW provided a rigorous theoretical approach to interpreting the
implications of the results of this study. Future research could explore the next steps
in designing a behaviour change intervention using the BCW, such as selecting the
target behaviour contributing to the behavioural problem and designing an
intervention (Michie et al., 2014).
2.5 CONCLUSION
The challenges of facilitating behaviour change within the healthcare setting
have been explored. The need for a behaviour change framework to guide the
development of this study has been discussed. The refined TDF, COM-B model and
BCW were selected to guide the evaluation of the factors that influence the referral
decision-making process to SPCS in the acute cancer setting.
Chapter 3: Integrative Review 21
Integrative Review
3.1 INTRODUCTION
In this chapter, an integrative review of the literature on the clinical,
professional and health system factors that influence referrals to SPCS in the acute
cancer setting is presented. To understand the behaviour in context, the COM-B
model linked to the refined TDF domains was used as an organising framework to
present the evidence on the referral decision-making process to SPCS. Each
component of the COM-B model and domain of the refined TDF were defined and
considered in the context of the integrative review findings to inform behavioural
analysis. By seeking to understand factors influencing the referral decision-making
process, researchers will be able to design targeted interventions to promote early
referrals to SPCS.
3.2 AIMS
The purpose of this review was to identify the clinical, professional and health
system factors that influence the decision-making process for a referral to be made to
SPCS for hospitalised patients with advanced cancer. An integrative review was
conducted to provide a comprehensive understanding of the factors that influence
key stakeholders involved in the referral decision-making process.
3.3 METHODS
3.3.1 Search strategies & selection criteria
Papers describing clinical, professional or health system factors influencing the
palliative care referral decision-making process for healthcare professionals,
hospitalised patients with advanced cancer, carers and/or families (> 50% sample
size) were sought. Medical subject headings and search terms (refer to Table 3.1)
were used to comprehensively search the following electronic databases: CINAHL®,
PubMed, The Cochrane Library, PsycINFO and Embase. Only peer-reviewed,
primary research papers published in English between 2004–July 2017 were
22 Chapter 3: Integrative Review
included. Papers that described patient referrals to palliative care units (> 50%
sample size) or factors/characteristics identified after referral were excluded.
Reference lists of the included articles were hand-searched to identify any additional
relevant papers.
Table 3.1.
The terms used in the search strategy
('advanced cancer' OR oncolog* OR cancer OR neoplasm* OR carcinom* OR tumour* OR tumor* OR malignan* OR 'solid tumour' OR 'solid tumor' OR neuroblastom* OR rhabdomyoscarcom* OR teratom* OR hepatom* OR hepatoblastom* OR medullobastom* OR retinoblastom* OR meningioma* OR gliom* OR 'terminal cancer' OR 'oncology nursing' OR 'cancer care nursing' OR 'cancer nursing' OR Onco-hematological OR ‘metastatic cancer’ OR haemat* OR hemat* OR leukem* OR leukaem* OR lymphoma) AND (factor* OR clinical OR professional OR health system OR determinant* OR component* OR aspect* OR circumstance* OR element* OR agent* OR ‘ethical dilemmas’ OR barrier* OR facilitator*) AND (acute OR hospital OR inpatient OR ward) AND (decision-making OR decision* OR judgement OR determination) AND (appropriate OR suitable OR timely OR opportune OR well-timed OR prompt OR auspicious OR favourable OR fitting OR befitting OR deserved OR acceptable OR justifiable OR rational OR reasonable OR felicitous) AND (refer* OR ‘palliative care referral*’ OR ‘oncology referral*’ OR ‘transfer of care’ OR consultation OR consult* OR utiliz* OR utilis* OR access) AND (‘specialist palliative care services’ OR ‘palliative care’ OR palliat* OR ‘palliative treatment’ OR ‘supportive care’ OR end-of-life OR ‘end of life’ OR ‘terminally ill’ OR dying OR end-stage OR ‘final phase’ OR incurable OR ‘care of the dying’ OR ‘palliative care consult*’ OR ‘palliative care nursing’ OR hospice OR ‘terminal care’ OR ‘integration of palliative care’)
3.3.2 Quality appraisal & data extraction
Quality assessment was performed using QualSyst, a standardised, validated
quality appraisal method with good inter-rater reliability scores (Kmet, Lee, & Cook,
2004; Lee et al., 2005). Two independent reviewers assessed the quality and
eligibility of all included studies. Reviewers resolved disagreements through
discussion and consensus or by employing a third independent reviewer to determine
the outcome. Papers that received an average score of > 0.75 (quality appraisal score
range: 0–1.0) were considered high quality. Data extraction was guided by the
Matrix Method© (Garrard, 2013).
Chapter 3: Integrative Review 23
3.3.3 Data synthesis
Qualitative findings were synthesised using the Flow Model (Miles &
Huberman, 1994) and quantitative findings were synthesised using the review Matrix
Method© (Garrard, 2013). Mixed research synthesis was performed using segregated
design (Sandelowski, Voils, & Barroso, 2006), following the steps of basic
convergent meta-integration (Frantzen & Fetters, 2016). The development of this
review was guided by an integrative review framework (Whittemore & Knafl, 2005)
and complementary frameworks on behaviour change—the refined TDF (Cane et al.,
2012); COM-B model; and BCW (Michie et al., 2011).
3.4 OUTCOMES OF THE LITERATURE SEARCH
The literature review screening process was conducted and reported in
accordance with the Preferred Reporting Items for Systematic Reviews and Meta-
Analyses (PRISMA) (Moher et al., 2015) (refer to Appendix A). After removing
duplicate records, a total of 4341 abstracts were screened, of which 91 full-text
articles were assessed for eligibility. Seventy-nine papers did not meet the selection
criteria and were excluded. Of the 12 included articles, four were qualitative studies
(Bakitas et al., 2013; Johnson et al., 2011; McGrath & Holewa, 2006; Morikawa,
Shirai, Ochiai, & Miyagawa, 2016), seven were quantitative studies (Charalambous,
Pallis, Hasan, & O'Brien, 2014; Fadul et al., 2009; Hong, Ng, Poulose, Lin, & Goh,
2011; Johnson et al., 2008; Penrod et al., 2017; C. Smith et al., 2012; Wentlandt et
al., 2012) and one was a mixed methods study (Ward et al., 2009). None of the
included studies presented the perspectives of hospitalised patients with advanced
cancer, their carers or families. All qualitative studies were interview-based studies.
Seven mixed method/quantitative studies used cross-sectional surveys
(Charalambous et al., 2014; Fadul et al., 2009; Hong et al., 2011; Johnson et al.,
2008; C. Smith et al., 2012; Ward et al., 2009; Wentlandt et al., 2012) and one was a
prospective observational study (Penrod et al., 2017). A summary of study
characteristics is presented in Table 3.2.
24 Chapter 3: Integrative Review
Table 3.2.
Review Matrix
Author; year & origin
Study title; nature of evidence &
quality score Aim of the study Setting & sample
Selection criteria; unit of analysis; data collection & analysis methods
Key findings
McGrath and Holewa (2006) Australia.
Missed opportunities: Nursing insights on end-of-life care for haematology patients. Qualitative. Open-ended interviews of experienced haematology nurses. Quality Appraisal Score: 0.78
Primary: to identify haematology nurses' points-of-view on end-of-life care. Secondary: to describe the factors that are essential for inclusion in a terminal care model of care for haematology patients.
• Setting: Nine public & private hospitals from three Australian States.
• Sample: 19 experienced haematology nurses working in the acute setting.
• Sampling method: Not
described.
• No inclusion or exclusion criteria listed.
• Unit of analysis: ‘Haematology patients do die in the curative system’ (overall theme).
• Data collection method: Audio-recorded interviews using techniques
such as probing; paraphrasing or silence were employed. Descriptive phenomenology was used to guide nurse interviews, to aid the development of a model for end-of-life care for haematology patients.
• Data analysis method: Thematic analysis.
• Focus on curative treatment inhibited patient access to SPCS in acute haematology setting.
Johnson et al. (2008) Australia.
Cancer specialists' palliative care referral practices and perceptions: results of a national survey. Quantitative. Cross-sectional survey. Quality Appraisal Score: 0.98
To explore cancer specialists’: • current referral behaviour • approach • viewpoint • factors that
promoted/inhibited referral to SPCS
• Setting & sample: 699 cancer specialists practicing in Australia.
• Sampling method: Participants selected from professional organization websites.
• Inclusion criteria: Australian doctors who spend a substantial part of their practice caring for people living with advanced cancer (oncologists, haematologists, respiratory physicians & CRC surgeons).
• Unit of analysis: Survey respondent (cancer specialist). • Data collection method:
Anonymous postal survey using validated survey instrument. • Data analysis method: Mean; SD; and CIs for continuous data. For
categorical data, frequencies and percentages. Pearson’s chi squared statistic and Fisher’s exact for univariate analysis. Backwards stepwise multiple logistic regression analysis was used to determine independent predictors of referring majority of advanced cancer patients to SPCS in last year.
• Most cancer specialists had positive attitudes towards SPCS, yet only 25% referred >80%of their patients with advanced cancer to SPCS.
Fadul et al. (2009) USA.
Supportive versus palliative care: What's in a name? Quantitative. Cross-sectional web-based survey. Quality Appraisal Score: 0.97
To determine: (i) the perceived effect of the
name palliative care versus supportive care on referral timing and referral rates to the service;
(ii) If there was a relationship between the demographic factors of medical oncologists and mid-level providers and their perspective on both service names and subsequent consequences for practice.
• Setting & sample: 140 medical oncologists and midlevel providers (advanced practice nurses and physician assistants) practicing at a cancer centre in Texas.
• Sampling method: Random sample generated using statistics software.
• Inclusion criteria: Medical oncologist or midlevel provider; provides hands-on care to cancer patients at least one day a week; makes referrals to SPCS or takes part in decision-making process.
• Unit of analysis: Medical oncologist or midlevel provider. • Data collection method: Web-based survey using validated survey
instrument.
• Data analysis method: Descriptive statistics.
• There were no statistically significant differences in attitudes when oncologists and midlevel providers considered the likelihood of referring patients at the end of life to a supportive care or palliative care service.
Chapter 3: Integrative Review 25
Author; year & origin
Study title; nature of evidence &
quality score
Aim of the study Setting & sample Selection criteria; unit of analysis; data collection & analysis methods
Key findings
Ward et al. (2009) Australia.
Collaborating or co-existing: a survey of attitudes of medical oncologists toward specialist palliative care. Mixed methods. Cross-sectional survey. Quality Appraisal Score: 0.97
Investigating the attitudes and perspectives (quantitative data) of Australian medical oncologists and trainees in medical oncology, towards SPCS.
Secondary question (qualitative data): how could cooperation be enhanced between medical oncologists & SPCS?
• Setting & sample: 115 medical oncologists and trainees practicing in Australia
• Sampling method:
members of MOGA were invited via email.
• Inclusion criteria: MOGA member; working clinically in medical oncology.
• Unit of analysis: Medical oncology specialist/trainee.
• Data collection method: Web-based survey. Final survey instrument informed by content validity and pilot testing.
• Data analysis method:
Descriptive statistics, attitude indices and thematic analysis.
• Oncologists and medical oncology trainees considered patient unwillingness (60.9%), family opposition (67%), in-patient bed availability (34.8%) and insufficient SPCS staff (30.4%) as major barriers to SPCS collaboration.
Hong et al. (2011) Singapore.
Attitude of doctors in an Asian oncology centre towards referral to palliative care. Quantitative. Cross-sectional survey. Quality Appraisal Score: 0.85
What is the understanding, attitudes and behaviours of doctors towards palliative care?
• Setting & sample: 51 physicians practicing at a Government-subsidized cancer centre (majority of Singapore’s oncologists work here).
• Sampling method: Departmental secretaries distributed and collected surveys from physicians.
• Inclusion criteria: Must provide hands-on care to cancer patients.
• Exclusion criteria: Physicians studying outside of cancer centre. • Unit of analysis: Physician. • Data collection method: Anonymous survey, distributed by departmental
secretaries by hand. Face validity informed final survey instrument. • Data analysis method: Descriptive statistics expressed as cross-
tabulations, chi-square, and Fisher’s exact test were used. Logistical regression analyses.
• 95.8% of medical oncologists reported discussing palliative care referral with patients during the previous three months.
• 97.9% felt confident engaging patients in a palliative care discussion.
Johnson et al. (2011) Australia.
Australian general practitioners' and oncology specialists' perceptions of barriers and facilitators of access to specialist palliative care services. Qualitative. Semi-structured telephone interviews. Quality Appraisal Score: 0.78
What are the barriers to SPCS referral? What the facilitators for SPCS referral?
• Setting & sample: 40 GP and oncology specialists (medical oncology, radiation oncology, haematologists, surgical/gynae-oncologists, respiratory physicians and colorectal surgeons) practicing in Australia.
• Sampling method:
Identified sample through professional websites, organizations or professional contacts of advisory group. Mailed invitation with follow up phone call to arrange interview.
• Inclusion criteria: GP or oncology specialist who provides care to patients with advanced cancer. Unit of analysis: Disease and treatment characteristics; psychosocial characteristics; patient-provider communication and relationships; health services & resources; health professionals’ skills; timing of access (six themes).
• Data collection method: Semi-structured audio-taped telephone interviews; using interview guide.
• Data analysis method: Thematic analysis.
• Some oncologists and GPs agreed their palliative care knowledge, capabilities to honestly communicate about disease progression and prognosis, access to and proximity of SPCS influenced the referral decision-making process.
26 Chapter 3: Integrative Review
Author; year & origin
Study title; nature of evidence &
quality score Aim of the study Setting & sample
Selection criteria; unit of analysis; data collection & analysis methods
Key findings
C. Smith et al. (2012) USA.
Lung cancer physicians’ referral practices for palliative care consultation. Quantitative. Cross-sectional survey. Quality Appraisal Score: 0.87
What are the factors influencing the physician decision-making process to refer lung cancer patients to PC?
• Setting: 5 medical centres with established palliative care services in NYC.
• Sample: 155 lung cancer physicians
• Sampling method: Not
clearly described. Hospital staff lists were used to identify physicians.
• Inclusion criteria: Physicians who were known to regularly manage care of patients with lung cancer.
• Unit of analysis: Attending physicians and fellows caring for lung cancer patients. Data collection method: Self-administered survey. Pilot tested survey; no validity testing reported.
• Data analysis method: Logistical regression and multiple regression. Compared physician groups who referred > 25% VS < 25% of their patients to SPCS.
• Lung cancer physicians were 3.07 times (95% CI 1.56–6.02) more likely to refer if they perceived SPCS had more time available to manage complex symptoms.
Wentlandt et al. (2012) Canada.
Referral practices of oncologists to specialized palliative care. Quantitative. Cross-sectional survey. Quality Appraisal Score: 1.00
What are the referral practices of oncologists to SPCS? What are the participant characteristics, factors and perspectives of oncologists in relation to late VS timely SPCS referral?
• Setting & sample: 603 oncologists practicing in Canada.
• Sampling method: All CAMO, CARO and CSSO members were invited to participate in survey.
• Inclusion criteria: CAMO; CARO and CSSO members (oncologist groups). Unit of analysis: Oncologist.
• Data collection method: Anonymous survey; sent via email and mail. Coffee voucher incentive provided. Survey underwent pilot testing, but validity testing was reported.
• Data analysis method: Calculated referral frequency index; descriptive statistics; categorical data; multiple linear and logistic regression.
• Oncologists were more likely to refer at diagnosis or during cancer treatment if they were content with SPCS availability and acceptance criteria (p < 0.001).
Bakitas et al. (2013) USA.
Oncologists’ perspectives on concurrent palliative care in a National Cancer Institute-designated comprehensive cancer center. Qualitative (RCT supplementary study). Semi-structured interviews. Quality Appraisal score: 0.93
To measure the effect of the ENABLE II RCT on oncology clinicians’ care provision and referral practices for patients with advanced cancer. What is your understanding of what palliative care entails?
• Setting: Two large healthcare centres in New Hampshire and Vermont.
• Sample: 38 oncology
clinicians (physicians and nurse practitioners) were recruited; 35 were interviewed.
• Sampling method: All
oncology clinicians at the study sites were invited to participate in the interviews.
• Inclusion criteria: Advanced, metastatic or recurrent cancer; refractory disease (haematology patients); receiving active anticancer treatment, irrespective of intent; prognosis two years or less. Unit of analysis: Themes identified across three areas: oncologists’ self-assessment of advanced cancer patient care (treating the whole patient; quality versus quantity of life focus; some patients just want to fight; helping with transitions – timing is everything); oncology clinician views on palliative care and ENABLE II RCT (refer early and often; referral challenges – “palliative” equals hospice, “heme patients are different”; palliative care consultant to co-manager; palliative care “shares the load”); ENABLE facilitated integration.
• Data collection method: Audio-recorded interviews using interview guide. Interview guide was pilot tested and developed based on literature review and expertise of oncology physician and nurse practitioner.
• Data analysis method: Thematic analysis.
• Majority of oncologists and nurse practitioners viewed the concurrent model of care between SPCS and primary treating team favourably, based on their experiences during the ENABLE II RCT.
• After this study, most oncologists and nurse practices continue to provide this model of care as part of their standard practice.
Chapter 3: Integrative Review 27
Note. SPCS = Specialist Palliative Care Service; SD = standard deviation; CI = confidence interval; CRC = Colorectal Cancer; USA = United States of America; MOGA = Medical Oncology Group of Australia; GP = general practitioner; PC = Palliative Care; NYC = New York City; CAMO = Canadian Association of Medical Oncologists; CARO = Canadian Association of Radiation Oncologists; CSSO = Canadian Society of Surgical Oncology; RCT = randomised control trial; ENABLE II RCT = Educate, Nurture, Advise, Before Life Ends II randomised clinical trial; EORTC LCG = European Organization for Research and Treatment of Cancer Lung Cancer Group.
Author; year & origin
Study title; nature of evidence &
quality score Aim of the study Setting & sample
Selection criteria; unit of analysis; data collection & analysis methods
Key findings
Charalambous et al. (2014) Europe.
Attitudes and referral patterns of lung cancer specialists in Europe to specialized palliative care and the practice of early palliative care. Quantitative. Online cross-sectional survey. Quality Appraisal Score: 0.84
To examine availability of palliative care (PC) services. What are the attitudes and referral patterns of European Lung cancer specialists towards PC?
• Setting & sample: 50 lung cancer specialists practicing in Europe. .
• Sampling method: Members of the EORTC LCG were asked via email to participate in an on-line survey.
•
• Inclusion criteria: Membership in EORTC LCG.
• Unit of analysis: Medical/radiation/clinical oncologists; pulmonologists; thoracic surgeons.
• Data collection method: Online survey of membership with two email reminders sent. Survey developed on basis of similar surveys and published literature. No survey validity testing reported.
• Data analysis method: Descriptive statistics; Fisher’s exact test; Chi-squared test. Explored statistics with caution – inadequately powered sample size.
• Only 22% of lung cancer specialists referred during the early stages of disease, despite 64% having a positive attitude towards SPCS.
Morikawa et al. (2016) Japan.
Barriers to the collaboration between hematologists and palliative care teams on relapse or refractory leukemia and malignant lymphoma patients’ care: a qualitative study. Qualitative. Semi-structured interviews. Quality Appraisal Score: 0.98
To assess haematologists’ and palliative care physicians’ perceptions of SPCS and identify barriers for collaboration between both teams.
• Setting & sample: 11 haematologists and 10 palliative care physicians practising in hospital/cancer centre, Japan.
• Sampling method:
Snowball sampling technique was used to identify haematologists and palliative care physicians from hospitals that provided these specialities.
• Inclusion criteria: board-certified specialists with a minimum of five years’ experience.
• Unit of analysis: Content identified across three areas: perceptions of the roles of SPCS (e.g., the main role of SPCS is pain management; providing psychological support; coordinating care between patient and medical teams); expectations of the roles of SPCS (e.g., support for patients’ families; providing pain management advice; providing advice on managing patients’ psychological distress); barriers to collaboration between teams (e.g., don’t feel the need to refer; difficult timing of referral).
• Data collection method: Audio-recorded face-to-face interviews were conducted by one researcher.
• Data analysis method: Content analysis.
• Haematologists and palliative care physicians share similar perceptions of the role of SPCS. Haematologists and palliative care physicians agreed it is difficult to refer haematology patients to SPCS when they are receiving curative treatment.
Penrod et al. (2017) USA.
Characteristics of hospitalized cancer patients referred for in-patient palliative care consultation. Quantitative. Prospective, multisite observational study. Quality Appraisal Score: 1.00
Identify hospitalised advanced cancer patient characteristics associated with referral to SPCS.
• Setting & sample: Patients admitted with advanced cancer at five hospitals with well-established SPCS during 2007-2011.
• Sampling method: Admission records were screen for eligible patients and written consent was obtained.
• Inclusion criteria: > 18 years; metastatic cancer, locally advanced cancer or transplant-ineligible lymphoma or myeloma; enrolled in study within 48hrs of admission.
• Exclusion criteria: non-English speaking background; dementia; non-verbal or unresponsive; admitted for routine chemotherapy; died or discharged within 48hrs of admission; previously referred to SPCS.
• Unit of analysis: receipt of referral to SPCS.
• Data collection method: validated instrument used to measure utilization of SPCS by patients with advanced cancer.
• Data analysis method: descriptive statistics; hospital fixed effect
multivariable logistic regression.
• Patients with a high symptom burden and comorbidities on admission were more likely to be referred to SPCS than other cancer patients.
Chapter 3: Integrative Review 27
3.5 QUALITY APPRAISAL OUTCOMES
The methodological quality of all included studies was high (refer to Table
3.2). All qualitative papers clearly or partially described the study design, context
and data sampling methods (Bakitas et al., 2013; Johnson et al., 2011; McGrath &
Holewa, 2006; Morikawa et al., 2016). Minor weaknesses of the qualitative studies
included incomplete descriptions of participant characteristics (McGrath & Holewa,
2006), reflexivity of the account provided (Bakitas et al., 2013; Johnson et al., 2011;
McGrath & Holewa, 2006; Morikawa et al., 2016), data collection and analysis
methods (Bakitas et al., 2013; Johnson et al., 2011).
All mixed method and quantitative studies sufficiently described their objective
and study design (Charalambous et al., 2014; Fadul et al., 2009; Hong et al., 2011;
Johnson et al., 2008; Penrod et al., 2017; C. Smith et al., 2012; Wentlandt et al.,
2012). Minor weaknesses of the mixed method and quantitative studies included that
the selected sampling methods were biased towards a specific group (Charalambous
et al., 2014; Fadul et al., 2009; Hong et al., 2011) or only partially described (C.
Smith et al., 2012), and some studies lacked variance estimates (e.g., confidence
intervals, standard errors) for primary or secondary outcomes (Charalambous et al.,
2014; Fadul et al., 2009; Ward et al., 2009). Non-response bias may have influenced
the findings of all survey-based studies (Charalambous et al., 2014; Fadul et al.,
2009; Hong et al., 2011; Johnson et al., 2008; C. Smith et al., 2012; Ward et al.,
2009; Wentlandt et al., 2012). In the Singaporean study (Hong et al., 2011), social
desirability bias was a potential confounder, as the respondents worked in the same
hospital as one of the study investigators.
3.6 FINDINGS
The integrative review findings were categorised using the COM-B model,
linked to the 14 domains of the refined TDF to highlight how healthcare
professionals’ capabilities, opportunities, and motivations influenced their referral
behaviours (Michie et al., 2011). Appendix B presents an analysis of all factors
identified in this review that influence healthcare professionals’ referral behaviours
towards SPCS. To reduce repetition of findings, overlapping constructs (identity;
28 Chapter 3: Integrative Review
group identity; beliefs; consequents; professional confidence; action planning)
between the domains of the refined TDF were only presented once (Cane et al.,
2012). For the purposes of this review, findings overlapping the domains of
knowledge, cognitive and interpersonal skills; and social influences and
environmental context and resources were presented together.
3.6.1 PSYCHOLOGICAL CAPABILITY
Psychological capacity refers to the individual’s ability to engage in a specific
activity (Michie et al., 2011). In this section, evidence of whether healthcare
professionals have the necessary knowledge, memory, attention, cognitive and
interpersonal skills (Michie et al., 2014; Michie et al., 2011) to engage in the referral
decision-making process and initiate referrals to SPCS where needed is examined.
Knowledge, cognitive & interpersonal skills
Knowledge is defined as an individual being aware that something exists (Cane
et al., 2012). Cognitive skills refer to an individual’s ability to rationalise information
when performing tasks, whereas interpersonal skills describe an individual’s
capacity to maintain effective relationships, demonstrate cooperation, flexibility and
social responsibility (Cane et al., 2012). In the context of this review, the knowledge
and skills domains refer to how healthcare professionals’ palliative care knowledge,
competence and confidence in performing comprehensive needs-based assessments,
symptom management, and establishing therapeutic relationships affect their referral
behaviours (Cane et al., 2012).
Palliative care expertise can be acquired through education and training. Two
included studies (Johnson et al., 2011; Wentlandt et al., 2012) examined whether
palliative care training of junior physicians facilitated referrals to SPCS. A Canadian
survey (n = 603) found oncologists who completed a palliative care rotation (n =
285) were twice as likely to refer a patient to palliative care services prior to
chemotherapy, rather than during treatment (Wentlandt et al., 2012). The results of
an Australian qualitative study (n = 40) (Johnson et al., 2011) provided a possible
explanation for these findings. Physicians with palliative care training (or experience
providing palliative care) (n = 22) described the concept of palliative care more
Chapter 3: Integrative Review 29
holistically, suggesting that training can lead to an improved understanding of the
principles of palliative care (Johnson et al., 2011). Nevertheless, a significant
knowledge gap remains as none of the included studies examined how palliative care
knowledge, knowledge of the task environment, interpersonal skills, ability, skill
assessment, practice or healthcare professional competence performing related tasks
affected referral behaviours (Cane et al., 2012). Overall, limited evidence indicates
previous palliative care training can lead to an improved understanding of the
principles of palliative care (Johnson et al., 2011; Wentlandt et al., 2012), although
there is no direct evidence that such understanding leads to more appropriate
referrals.
Memory, attention and decision processes
Memory, attention and decision processes refer to the ability of individuals to
retain information, exclusively focus on something and choose between two or more
alternatives (Cane et al., 2012). In the context of this review, this domain describes to
the ability of healthcare professionals to exclusively focus on relevant referral cues
and choose between two or more pathways of care (Cane et al., 2012). To date, little
is known about how and why healthcare professionals decide to refer to SPCS.
In seven studies, healthcare professionals’ recognition of advanced disease
(Bakitas et al., 2013; Johnson et al., 2008; Johnson et al., 2011; C. Smith et al.,
2012); need for symptom management (Johnson et al., 2008; Johnson et al., 2011;
Penrod et al., 2017; Wentlandt et al., 2012); patient and family support (Bakitas et
al., 2013; Johnson et al., 2011; Wentlandt et al., 2012); palliative treatment (Bakitas
et al., 2013; Johnson et al., 2011; McGrath & Holewa, 2006) and/or patient readiness
(Bakitas et al., 2013; Johnson et al., 2011) facilitated referrals to SPCS. Similarly, a
prospective multisite observational study (n = 3027) found significant predictors for
referrals to SPCS included patients who were taking analgesia, anti-emetics or
aperients, who needed assistance with transfers from bed, and/or who had
comorbidities on admission (Penrod et al., 2017). A qualitative study (n = 40)
(Johnson et al., 2011) provided an alternative perspective, as several physicians
recognised the importance of providing psychosocial support yet rarely made
referrals to SPCS for this reason. These findings highlight the complexity of the
30 Chapter 3: Integrative Review
referral decision-making process, indicating other factors apart from clinical cues
influence referral decisions (Johnson et al., 2011).
Even when a rationale for making a referral had been established, healthcare
professionals frequently expressed uncertainty about the optimal time to refer
patients to SPCS (Bakitas et al., 2013; Johnson et al., 2008; Johnson et al., 2011;
Morikawa et al., 2016; Ward et al., 2009; Wentlandt et al., 2012). Evidence about the
influence of this domain is limited in the literature, which did not measure how the
three theoretical constructs (memory; attention control; and cognitive
overload/tiredness) affected the referral behaviours of healthcare professionals (Cane
et al., 2012). Overall, these findings highlight how healthcare professionals can be
conflicted by the need to act on clinical referral cues when they are uncertain about
the consequences of the referral (Bakitas et al., 2013; Johnson et al., 2008; Johnson
et al., 2011; Ward et al., 2009; Wentlandt et al., 2012).
3.6.2 SOCIAL & PHYSICAL OPPORTUNITY
Social and physical opportunity is defined as all the external factors that make
it possible to do something (Michie et al., 2011). Specifically, it examines whether
social influences, resources and the environmental context (Michie et al., 2014)
make it possible for healthcare professionals to initiate patient referrals to SPCS
where needed.
Social influences & environmental context & resources
Social influences refer to interpersonal processes (such as power, hierarchy,
group norms and social interactions) that can affect the thoughts, feelings or
behaviours of individuals (Cane et al., 2012). The environmental context is any
aspect of the environment that influences an individual’s skill development,
independence, competence and adaptive behaviours (Cane et al., 2012). For the
purposes of this review, social influences and environmental context and resources
describe how interpersonal processes between healthcare professionals and the
setting (Michie et al., 2011) affect the referral behaviours of healthcare professionals.
Eight studies identified the degree of integration (refer to Section 1.6 for study
definition) between services and/or time constraints affected referral behaviours
Chapter 3: Integrative Review 31
(Bakitas et al., 2013; Charalambous et al., 2014; Hong et al., 2011; Johnson et al.,
2008; Johnson et al., 2011; Morikawa et al.; Ward et al., 2009; Wentlandt et al.,
2012). In an American study (n = 35) (Bakitas et al., 2013), SPCS provided a range
of collaborative services (attendance at tumour stream meetings; co-management;
and consult services). The initiation of these services was associated with providing a
well-integrated oncology palliative care environment that promoted referrals to the
service (Bakitas et al., 2013). On the other hand, an Australian study (n = 19)
(McGrath & Holewa, 2006) described a poorly integrated haematology-palliative
care environment, where a curative-driven organisational culture and lack of
structured collaborative opportunities blocked referrals to SPCS. Similarly, some
Australian cancer specialists (Johnson et al., 2011) report limited communication and
interaction with SPCS resulted in poor integration between services and missed
opportunities for referral. Overall, these studies indicate the degree of integration
between oncology/haematology and palliative care services inhibits or promotes
referrals to SPCS (Bakitas et al., 2013; Hong et al., 2011; Johnson et al., 2011;
McGrath & Holewa, 2006; Morikawa et al.).
Three elements of integration were frequently reported to influence referral
behaviours: availability, resources and access to SPCS (Bakitas et al., 2013; Hong et
al., 2011; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006;
Morikawa et al.; Ward et al., 2009; Wentlandt et al., 2012). In an Australian study (n
= 115) (Ward et al., 2009), 30% of oncologists agreed insufficient SPCS staff
resources was a major barrier to referral, which was supported by the findings of two
qualitative studies (Johnson et al., 2011; Morikawa et al.). A Canadian study (n =
603) (Wentlandt et al., 2012) found SPCS acceptance of patients receiving
chemotherapy, good availability and a wide range of SPCS were statistically
significant predictors of higher referrals to the service. Similarly, an American
survey (n = 155) (C. Smith et al., 2012) found lung cancer physicians were 3.07
times (95% CI 1.56–6.02) more likely to refer if they perceived SPCS had more time
available to manage complex symptoms. This evidence suggests that access to a
comprehensive, well-resourced SPCS that accepted patients receiving chemotherapy
promoted referral (Charalambous et al., 2014; Hong et al., 2011; Johnson et al.,
2008; Wentlandt et al., 2012).
32 Chapter 3: Integrative Review
The service name is another aspect of the environment identified in some
studies as influencing referral behaviours (Fadul et al., 2009; Wentlandt et al., 2012).
An American study (n = 140) (Fadul et al., 2009) found oncologists and midlevel
providers were more likely to refer patients receiving advanced cancer treatments to
a service called supportive care (125, 89% vs 96, 69%; p < .0001) rather than
palliative care. However, service name had no impact on the likelihood of referrals
at the end of life (Fadul et al., 2009). To date, no consensus has been reached
regarding the most appropriate service name to promote referrals to SPCS (Fadul et
al., 2009), although these findings highlight the potential for health professional
attitudes, beliefs and perceptions about palliative care to influence their referral
behaviour.
Group norms regarding referral behaviours were markedly different in the
haematology and oncology-based settings (Bakitas et al., 2013; Johnson et al., 2011;
McGrath & Holewa, 2006). In an Australian study (n = 19), haematologists were
rarely observed to refer patients to SPCS (McGrath & Holewa, 2006). In contrast, an
American (n = 35) (Bakitas et al., 2013) and an Australian (n = 40) study (Johnson et
al., 2011) found most oncology healthcare professionals increased their palliative
focus as the cancer or complexity of physical symptoms progressed. These social
contexts of practice were affected by the hierarchy of roles within the healthcare
system. For instance, some haematology nurses recognised the need for SPCS
involvement but did not intervene, as they felt powerless to change the situation
(McGrath & Holewa, 2006). In this study, haematologists were viewed as the
primary decision-maker, who often pursued curative treatments irrespective of
patient preferences (McGrath & Holewa, 2006). Similar power imbalances were not
described in studies in the oncology setting (Bakitas et al., 2013; Johnson et al.,
2011). Understanding how social influences and environmental context and
resources affect the referral behaviours of healthcare professionals is limited by the
evidence, which does not examine the following theoretical constructs: social
pressure, social support, group conformity, intergroup conflict, alienation, group
identity, modelling, or salient events/critical incidents (Cane et al., 2012). Overall,
limited evidence (Bakitas et al., 2013; Johnson et al., 2011; McGrath & Holewa,
2006) suggests group norms and power imbalances influence healthcare professional
referral behaviours.
Chapter 3: Integrative Review 33
3.6.3 REFLECTIVE MOTIVATION
Reflective motivation is defined as choosing to behave in a particular way after
thinking deeply about something (Michie et al., 2011). It includes an individual’s
social/professional role and identity, beliefs about their capabilities, degree of
optimism, intentions, goals and beliefs about consequences (Michie et al., 2014). In
the context of this review, reflective motivation examines how thoughtful conscious
decisions direct the referral behaviours of healthcare professionals.
Social/professional role & identity
Social/professional role and identity is a consistent set of behaviours and
personal qualities displayed by individuals in society or within the workplace (Cane
et al., 2012). In this review, social/professional role and identity refers to how the
personal qualities, role and identity of healthcare professionals working in the acute
cancer setting affect their referral behaviours (Cane et al., 2012). In all of the studies,
physicians and/or nurse practitioners had the authority to initiate referrals to SPCS
(Bakitas et al., 2013; Charalambous et al., 2014; Fadul et al., 2009; Hong et al., 2011;
Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; C. Smith et al.,
2012; Ward et al., 2009; Wentlandt et al., 2012). The professional role of physicians
was significantly associated with referral practices in two studies (Johnson et al.,
2008; Wentlandt et al., 2012). In a Canadian study (n = 603) (Wentlandt et al., 2012),
early referral was significantly associated with being a radiation or surgical
oncologist. Similarly, an Australian study (n = 699) (Johnson et al., 2008), found
significant predictors of referral included working as a cancer specialist (p = 0.008).
However, the influence of this variable cannot be established, given the lack of
attention to the influence of professional roles in existing studies (Johnson et al.,
2008; Wentlandt et al., 2012).
Three studies (Charalambous et al., 2014; Johnson et al., 2011; Ward et al.,
2009) found a lack of professional boundaries between the treating team and SPCS
discouraged referrals to the service. A European study (Charalambous et al., 2014),
found physician concern about the expertise of SPCS (18%) or interference with the
oncology treatment plan (8%) inhibited referrals to the service. These findings were
supported by a qualitative study (Johnson et al., 2011). Further explanation is
34 Chapter 3: Integrative Review
provided by an Australian study (Ward et al., 2009), which found 14% of oncologists
expressed the need for mutual respect and understanding between disciplines (11%
advocated for cross-training) to improve future collaboration. None of the included
studies examined how leadership, organisational commitment, professional or social
identity influenced referral behaviours (Cane et al., 2012). Overall, limited evidence
indicates a lack of clarity about professional boundaries between the treating team
and SPCS inhibited referrals to the service (Charalambous et al., 2014; Johnson et
al., 2011; Ward et al., 2009).
Beliefs about capabilities
Beliefs about capabilities refers to an individual’s acceptance of the reality
about an ability that can be applied to their everyday life (Cane et al., 2012). In the
context of this review, beliefs about capabilities focuses on how healthcare
professionals’ beliefs about their abilities or those of others affects their referral
behaviours (Cane et al., 2012). Specifically, this domain examines how healthcare
professionals’ perception of SPCS, perceived competence in symptom management
and confidence in initiating discussions about prognosis or palliative care affected
their referral behaviours (Cane et al., 2012). An Australian study (n = 699) found
82% of cancer specialists believed SPCS provided superior care, yet only 25%
referred more than three quarters of their patients with advanced cancer to the service
(Johnson et al., 2008). Similarly, another Australian study (n = 115) (Ward et al.,
2009), reported 87% of medical oncologists and trainees agreed palliative care was
central to their practice, yet less than half referred their patients to SPCS. These
findings suggest that referral behaviours are complex and cannot be exclusively
attributed to one factor (Johnson et al., 2008; Ward et al., 2009).
Seven studies (Bakitas et al., 2013; Hong et al., 2011; Johnson et al., 2008;
Johnson et al., 2011; McGrath & Holewa, 2006; Ward et al., 2009; Wentlandt et al.,
2012) presented findings about how self-perceived competence and confidence
influenced the referral behaviours of healthcare professionals. In an Australia-wide
survey of cancer specialists (n = 699) (Johnson et al., 2008), 48% felt capable of
controlling physical symptoms and were consequently less likely to refer to SPCS.
These findings were supported by a qualitative study (Johnson et al., 2011).
Similarly, an Australian study of medical oncologists and trainees (n = 115) (Ward et
Chapter 3: Integrative Review 35
al., 2009) found self-confidence with management of physical (92%) and
psychological symptoms (62%) was associated with 51.3% opting to refer only when
complex care needs escalated. Overall, these studies suggest some healthcare
professionals only consider referral when they no longer feel capable of managing
complex symptoms (Johnson et al., 2008; Johnson et al., 2011; Ward et al., 2009).
A Canadian study found 74% (n = 603) of physicians felt confident initiating
palliative care discussions, which was associated with 84% regularly referring
terminally ill patients to SPCS (Wentlandt et al., 2012). These results were
complemented by three qualitative studies (Bakitas et al., 2013; Johnson et al., 2011;
McGrath & Holewa, 2006) that found self-perceived competence in prognostic
discussions promoted healthcare professionals to introduce and/or refer patients to
SPCS (Bakitas et al., 2013; Johnson et al., 2011). This finding is complemented by
other studies that found healthcare professionals who expressed difficulty discussing
death, dying and/or prognostic information with patients were less likely to refer
(Johnson et al., 2011; McGrath & Holewa, 2006). The influence of this domain on
the referral behaviours of healthcare professionals is limited by the included studies,
which did not examine the effects of self-efficacy, perceived behavioural control,
self-esteem and empowerment (Cane et al., 2012). Overall, healthcare professionals’
degree of self-perceived competence and/or confidence in symptom management and
palliative care discussions directly influenced referral behaviours (Bakitas et al.,
2013; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; Ward et
al., 2009; Wentlandt et al., 2012).
Optimism
Optimism refers to an individual’s degree of confidence that desired goals will
be fulfilled (Cane et al., 2012). In the context of this review, optimism includes
healthcare professionals’ degree of confidence that patient referrals to SPCS will
occur where needed. Most oncologists and nurse practitioners (post-ENABLE II
RCT) expressed confidence about initiating early referrals to SPCS and chose to
introduce this as a standard disease pathway for some patients (Bakitas et al., 2013).
In contrast, an Australian study (n = 19) (McGrath & Holewa, 2006) reported
haematologists had an unrealistic focus on cure, indicated by the provision of active
cancer treatment during the terminal stages, lack of palliative care discussions and
36 Chapter 3: Integrative Review
referrals to the service. Understanding of the influence of optimism is limited by the
included studies, which did not examine how unrealistic optimism influenced
healthcare professional referral behaviours (Cane et al., 2012). Overall, limited
evidence suggests that the degree of optimism about referral directly influences the
referral behaviours of healthcare professionals (Bakitas et al., 2013; McGrath &
Holewa, 2006).
Beliefs about consequences
Beliefs about consequences is defined by Cane et al. (2012) as a feeling of
being sure about outcomes of a behaviour within a specific context. In the context of
this review, beliefs about consequences refers to healthcare professionals’ acceptance
of the reality that specific outcomes occur as a result of their decision to refer or not
refer to SPCS (Cane et al., 2012). Three studies reported that healthcare professionals
believed that referral to SPCS caused distress in patients and their families (Bakitas
et al., 2013; Fadul et al., 2009; C. Smith et al., 2012). In an American study (n = 140)
(Fadul et al., 2009), oncologists and midlevel providers believed referral to a service
named palliative care reduced hope for the future (44%) and promoted distress
(33%) in patients and their families. Likewise, an American survey (n = 155) of lung
cancer physicians (C. Smith et al., 2012), found a statistically significant relationship
existed between low referral rates and the belief that palliative care referrals caused
psychosocial distress. Qualitative studies expanded on these findings, reporting that
healthcare professionals did not refer if they had previously experienced patient
refusals (Bakitas et al., 2013) or believed it was inappropriate to inform patients they
were dying (Johnson et al., 2011).
Two separate studies (Hong et al., 2011; Johnson et al., 2008) reported
different findings: 56% (n = 699) (Johnson et al., 2008) and 83% (n = 51) (Hong et
al., 2011) of physicians did not believe palliative care referral discussions reduced
patients’ hope for the future. Similarly, many Australian physicians agreed patient
refusal (60.9%) or family opposition (67%) towards SPCS were only minor barriers
to referral (Ward et al., 2009). Qualitative findings (Bakitas et al., 2013) highlighted
the importance of sensitively introducing palliative care prior to referral to avoid
negative outcomes. However, none of the included studies presented findings on how
anticipated regret influenced healthcare professionals’ referral behaviours (Cane et
Chapter 3: Integrative Review 37
al., 2012). These studies demonstrate how healthcare professionals’ beliefs about the
consequences of referral inform their referral behaviours (Bakitas et al., 2013; Fadul
et al., 2009; Hong et al., 2011; Johnson et al., 2011; C. Smith et al., 2012).
Intentions
According to the refined TDF, intentions refers to something that you plan to
do in a specific way (Cane et al., 2012). In the context of this review, intentions refer
to any conscious decision to sustain active cancer treatment and/or refer a patient to
SPCS (Cane et al., 2012). McGrath & Holewa’s (2006) study (n = 19) provided
insights into the conscious decisions of haematologists who were observed to
purposefully sustain active treatment for patients with terminal cancer, rather than
refer to SPCS. In contrast, an American study (n = 35), (Bakitas et al., 2013) found
most oncology healthcare professionals made decisions motivated by their intention
to treat the whole person and provide quality (rather than quantity) of life to the
terminally ill. The findings of this domain are limited by the included studies, which
do not measure how two theoretical constructs (stages of change model or the
transtheoretical model) influence the referral behaviours of healthcare professionals
(Cane et al., 2012). Overall, limited evidence indicates that the intentions of
healthcare professionals directly inform their referral behaviours (Bakitas et al.,
2013; McGrath & Holewa, 2006).
Goals
Goals are defined by Cane et al. (2012) as a desired result that an individual
wants to accomplish. For the purposes of this review, goals focuses on the end state
that is achieved by initiating a referral and/or sustaining active treatment for patients
with advanced cancer (Cane et al., 2012). Healthcare professionals who wanted to
achieve a multidisciplinary or concurrent model of care agreed SPCS involvement
was beneficial for patients (Bakitas et al., 2013; Hong et al., 2011; Johnson et al.,
2008; Johnson et al., 2011; Ward et al., 2009; Wentlandt et al., 2012). An Australian
study (n = 699) (Johnson et al., 2008) found many physicians chose to refer patients
to SPCS based on an anticipated need for physical symptom control (83%) or
psychosocial support (47%). However, understanding of the influence of goals is
38 Chapter 3: Integrative Review
limited by the included studies, which did not measure how four theoretical
constructs (goal priority, action planning, goals [autonomous/controlled] and
goal/target setting) influenced the referral behaviours for healthcare professionals
(Cane et al., 2012). Overall, a desire to provide a concurrent model of care or receive
symptom management support motivated healthcare professionals to refer to SPCS
(Bakitas et al., 2013; Hong et al., 2011; Johnson et al., 2008; Johnson et al., 2011;
Ward et al., 2009; Wentlandt et al., 2012).
3.6.4 AUTOMATIC MOTIVATION
Using the COM-B model, automatic motivation is defined as habitual processes
or behaviours that occur without conscious thought or attention (Michie et al., 2011).
In the context of this review, automatic motivation refers to how reinforcement and
emotions can promote or inhibit the referral behaviours of healthcare professionals.
Reinforcement
Reinforcement refers to defined strategies employed to increase the likelihood
of an outcome, such as arranging dependent relationships, outcome-incentives or
deterrents (Cane et al., 2012). In the context of this review, reinforcement
encompasses any incentives or deterrents that influence the referral behaviours of
healthcare professionals (Cane et al., 2012). In three studies, access to specialist
assistance (such as symptom management support) acted as a referral incentive
(Bakitas et al., 2013; Johnson et al., 2011; Ward et al., 2009), especially when
healthcare professionals lacked the time or expertise to address patient concerns
(Bakitas et al., 2013). By contrast, an Australian study (n = 40) (Johnson et al., 2011)
reported narrow acceptance criteria deterred some physicians from referring to
SPCS. Understanding of the influence of reinforcement is limited by the included
studies, which did not measure how three theoretical constructs (reinforcement,
contingencies and sanctions) influenced referral behaviours (Cane et al., 2012).
Limited evidence suggests access to specialist assistance motivated referrals to the
service (Bakitas et al., 2013; Johnson et al., 2011; Ward et al., 2009).
Chapter 3: Integrative Review 39
Emotions
Emotions are complex feelings or reactions in response to a personally
significant experience (Cane et al., 2012). In the context of this review, emotions
refers to the complex reactions and feelings that healthcare professionals may
experience when considering referral to SPCS (Cane et al., 2012). In an Australian
study (n = 19) (McGrath & Holewa, 2006), several haematology nurses expressed
frustration and distress when they recognised patients needed SPCS involvement, yet
felt powerless to change the situation. In contrast, 20% of physicians in a
Singaporean study (n = 80) felt depressed when managing patients with progressive
disease, which may have prompted 23.9% of physicians to refer terminally ill
patients to SPCS (Hong et al., 2011). The influence of this domain is limited by the
included studies, which did not examine four theoretical constructs (fear, anxiety,
affect or burnout) related to this domain (Cane et al., 2012). Limited evidence exists
on how emotions affect the referral behaviours of healthcare professionals (Bakitas et
al., 2013; Johnson et al., 2011; McGrath & Holewa, 2006).
3.7 DISCUSSION
This is the first integrative review on the factors that influence referrals to
SPCS for patients with advanced cancer. The purpose of this review was to explore
the research question: What are the clinical, professional and health system factors
that influence the decision-making process for a referral to be made to SPCS for
hospitalised patients with advanced cancer? The findings of this review highlight the
importance of understanding the complexity of the healthcare professional referral
behaviours to design and successfully implement appropriate interventions. Based on
a small number of published studies, the evidence suggests a lack of congruence
exists between the psychological capabilities and/or reflective motivations of
healthcare professionals and their referral behaviours (Johnson et al., 2008; Ward et
al., 2009).
Specifically, the literature indicates that the ability of healthcare professionals
to recognise referral cues is influenced by the goals of care, beliefs about the
consequences of referral and/or degree of self-perceived competence and confidence
in symptom management and initiating palliative care discussions. These factors
40 Chapter 3: Integrative Review
interplay within a busy acute care environment, where contextual cues such as the
degree of integration between the treating team and SPCS, time constraints, group
norms and power imbalances between healthcare professionals contributed to
uncertainty about the best time to refer patients. Collectively, these findings highlight
the complex interactions between healthcare professionals’ psychological
capabilities, reflective motivations and their social and physical opportunities that
generate referral behaviours. Such complex interactions are possibly due to the
nature of healthcare professional referral behaviours, which do not occur in isolation,
but rather exist within specific social and environmental contexts (Johnson et al.,
2008; Michie et al., 2014; Ward et al., 2009).
These behaviours exist within an environment where competing or contributing
behaviours influence each other (Michie et al., 2014). Research suggests healthcare
professional referral behaviour is influenced by the individual practitioner’s
symptom management behaviours and/or degree of action in initiating palliative care
discussions (Bakitas et al., 2013; Hong et al., 2011; Johnson et al., 2008; Johnson et
al., 2011; McGrath & Holewa, 2006; Ward et al., 2009; Wentlandt et al., 2012).
Interactions with other people, such as healthcare professionals, patients and families
are also likely to contribute to healthcare professional referral behaviours. Healthcare
professionals do not solely control the referral process. It is a collaborative decision
involving consideration of the needs of the patient, desires of the family and
concerns of the multidisciplinary team (Broom et al., 2012). The subjective and
relational negotiation of referral is shaped by the biographies of patients and the
communication styles of healthcare professionals, patients and families when
discussing palliative care and SPCS (Broom, Kirby, Good, Wootton, & Adams,
2013, 2014; Broom, Kirby, Good, Wootton, Yates, et al., 2014). Further research is
needed to understand how this relational context contributes to the ambiguity that
surrounds whether and when to introduce SPCS.
By comparing the findings of this review with existing knowledge, the broader
context of the referral decision-making process is better understood. While evidence
has shown early referrals to SPCS for patients with advanced cancer provide
considerable benefits, complex factors have hindered efforts to translate this
knowledge into practice (Dalgaard, Bergenholtz, Nielsen, & Timm, 2014; Ferrell et
al., 2016; Greer, Jackson, Meier, & Temel, 2013; Parikh, Kirch, Smith, & Temel,
Chapter 3: Integrative Review 41
2013; Pirl et al., 2012; Temel et al., 2010). Difficulties negotiating the transition to
palliative care have recently been attributed to the readiness of healthcare
professionals, patients and families to discuss palliative care and the degree of
integration between services (Bakitas et al., 2013; Broom, Kirby, Good, Wootton,
Yates, et al., 2014; Fox, Windsor, Connell, & Yates, 2015; Johnson et al., 2011).
Inter-professional tensions between physicians and nurses were frequently described
by nurses from a range of specialties when reflecting on their experiences advocating
for referrals to palliative care (Broom, Kirby, Good, Wootton, Yates, et al., 2014).
While such findings suggest that interventions to promote integration between
disciplines are needed, they also indicate the need to raise awareness about the role
and intent of SPCS within hospitals and the broader community. Societal stigma
about death, dying and SPCS need to be addressed to ensure the wider community
are well-informed about the benefits of providing early access to SPCS to those who
need it.
In the USA, a lack of healthcare professional knowledge about hospice referral
policies and practices has been found to block hospice referrals, whereas increased
referral rates were associated with oncologists who rated their knowledge highly
(Bradley et al., 2002; Bradley et al., 2000). While it is not surprising that palliative
care knowledge promotes referrals to hospices, self-rated measurements may not be
the most accurate indicators of understanding. Quantitative research using more
objective measurements of healthcare professional knowledge is needed to determine
how this factor influences referral behaviours.
Current understanding of the factors that influence the referral decision-making
process is incomplete. This review reinforces the need to assess all relevant
behaviours of all key stakeholders prior to implementation design. Based on current
understanding, referrals to SPCS might be more likely to occur if a multifaceted
intervention was introduced that addressed the psychological capabilities, social and
physical opportunities and reflective motivations of healthcare professionals.
3.8 LIMITATIONS
The application of the integrative review methodology was limited due to the
small number of studies and their methodological designs. While the methodological
42 Chapter 3: Integrative Review
quality of the included studies was high, many of the studies employed survey
instruments with potentially limited validity and reliability. Moreover, several
included studies lacked a comprehensive approach to problem analysis or tended to
focus on a limited number of variables (Bakitas et al., 2013; Charalambous et al.,
2014; Fadul et al., 2009; Hong et al., 2011; Johnson et al., 2008; McGrath & Holewa,
2006; C. Smith et al., 2012). No evidence was identified on how physical capability
(component of COM-B model) or behavioral regulation (TDF domain) affected
healthcare professional referral behaviours towards SPCS (Cane et al., 2012). Further
research is needed to confirm and expand on the factors influencing the referral
decision-making process for healthcare professionals working in the acute cancer
setting. Future studies should focus on quantifying the influence of factors on the
behaviours of healthcare professionals, as well as examining causal relationships
between the personal and organisational factors and their observed clinical practices.
The included studies are heavily dominated by physicians practising in
developed countries, restricting the generalisability of these findings to similar
settings. Between 2004 – July 2017, one study (Maloney et al., 2013) reported the
experiences of patients with advanced cancer who received consultation from a
palliative care physician. This study (Maloney et al., 2013) was not included in the
review as the patients’ palliative care consultation experiences were evaluated as part
of a specially-designed palliative care intervention (case management with four
psycho-educational telephone advice sessions delivered by advanced practice nurses
with palliative care training and/or shared medical appointments with a palliative
care physician) for a randomised controlled trial (Bakitas et al., 2009). Only three
studies have explored nursing perspectives (Bakitas et al., 2013; Fadul et al., 2009;
McGrath & Holewa, 2006) in combination with other healthcare professionals. The
scarcity of research on the experiences of patients with advanced cancer is
concerning, given the escalating intensity and complexity of care needs as the disease
progresses. The lack of evidence about the role of cancer nurses was also surprising,
given their role to advocate for patients as part of the round-the-clock clinical care
provided in acute settings.
Limited research exists on the experiences of caregivers and families in the
referral decision-making process. Further qualitative research exploring the
experiences, feelings and expectations of caregivers and families caring for those
Chapter 3: Integrative Review 43
with advanced cancer is needed. While some researchers criticise the strength of
available evidence on this topic, many study designs which ranked highly on the
hierarchy of evidence are inappropriate to investigate this research question.
3.9 CONCLUSION
This review confirms that a complex interplay of factors (capabilities,
opportunities and motivations) interact to generate healthcare professional referral
behaviours. These factors are affected by contextual circumstances at a clinical,
professional, individual and healthcare system level. Based on current understanding,
an intervention is needed that is responsive to the psychological capabilities, social
and physical opportunities and reflective motivations of healthcare professionals.
Limited evidence exists about the referral behaviours of cancer nurses towards
SPCS. Further exploration of the cancer nursing, patient and carer roles is needed to
identify how they contribute to the referral process. It is vital that future
implementation studies consider the findings of this review when designing
interventions that aim to promote early referrals between acute palliative care and
cancer care services. The complexities of healthcare professional referral behaviours
demand a multifaceted intervention.
Chapter 4: Stage One Methods & Results 45
Stage One Methods & Results
4.1 AN OVERVIEW OF THE RESEARCH DESIGN
This study aimed to address a knowledge gap identified by the integrative
review by exploring how cancer nurses contribute to the palliative care referral
decision-making process and identifying the factors that influence nursing advocacy
behaviours. To develop and explore the research questions, this study was divided
into two stages. Stage One of the study was the development of a questionnaire for
measuring frequencies of cancer nurses’ advocacy behaviours for patient referrals to
SPCS and the demographic factors and potential determinants associated with these
behaviours. Questionnaire development was guided by the conceptual frameworks
(TDF and COM-B model). Using this questionnaire, the second stage involved an
online cross-sectional survey of cancer nurses distributed through two professional
organisations.
4.2 INTRODUCTION TO STAGE ONE
This chapter outlines how the integrative review findings informed Stage One
of the research plan—the development of a questionnaire to measure cancer nursing
advocacy actions towards instigating palliative care referrals and the potential
behavioural determinants and demographic factors that influence such behaviours.
Specifically, this chapter outlines the guiding frameworks and methods employed to
conceptualise the questionnaire, as well as participant selection, procedures, data
management, data analysis and outcomes of the subsequent validity and pilot testing.
4.3 STAGE ONE: DEVELOPMENT OF THE QUESTIONNAIRE
To date, no validated instrument exists to measure the nursing advocacy
behaviours that facilitate patient referrals to SPCS and the potential behavioural
determinants and demographic factors that influence these actions. Hence, the first
stage of this study was to develop a survey instrument that aimed to: (i) address this
knowledge gap within the literature; and (ii) confirm and expand on the findings of
46 Chapter 4: Stage One Methods & Results
the review. This instrument was entitled the Nursing Advocacy in Cancer Care
(NACC) questionnaire. The NACC questionnaire was developed following the
procedures outlined in Figure 4-1.
The initial NACC questionnaire had three sections: (i) Section one:
demographic factors; (ii) Section two: Nursing Advocacy Actions taken to facilitate
Palliative Care Referrals (NAA-PCR) subscale; and (iii) Section three: Determinants
Of Cancer Nursing Advocacy Behaviours (DOCNAB) subscale (refer to Appendix F).
Items measuring demographic factors were constructed based on at least one of
following criteria: (i) to determine whether respondents met the eligibility criteria for
this study; (ii) to provide a description of the sample profile; or (iii) to identify
factors that may influence cancer nursing advocacy behaviours. The NAA-PCR
subscale was conceptualised using definitions of nursing advocacy behaviours from
the Advocacy in Procedural Pain Care (APPC) survey instrument (Vaartio, Leino-
Kilpi, Suominen, & Puukka, 2009a, 2009b) and relevant literature findings,
predominantly relying on a literature review of cancer nursing advocacy behaviours
(Vaartio-Rajalin & Leino-Kilpi, 2011). The development of the DOCNAB subscale
involved mapping integrative review findings to the Determinants of Implementation
Behaviour Questionnaire (DIBQ) (Huijg et al., 2014). When integrative review
findings were not relevant to a key construct of any of these subscales, relevant
literature or expert opinion (applied in consultation with principal and associate
supervisors) were used to inform the development of survey items. Expert review of
survey content (n = 6) and pilot testing (n = 6) informed the final NACC
questionnaire.
Chapter 4: Stage One Methods & Results 47
Figure 4-1. Procedures for the development of the NACC questionnaire.
1. Initial development of items relevant to cancer nurses facilitating patient referrals to SPCS were derived from:
− The integrative review (reported in Chapter 3) − The Determinants of Implementation Behaviour Questionnaire (DIBQ) − Nurses as patient advocates in oncology care: activities based on literature (literature review) − Relevant literature providing definitions or measurements of key constructs − Expert opinion
2. Initial questionnaire divided into three sections:
− Potential behavioural determinants subscale (DOCNAB subscale) − Demographic factors − Types of nursing advocacy behaviours (NAA-PCR subscale)
3. Adapting the 93 items of the DIBQ to develop a new subscale that specifically assesses potential behavioural determinants for nursing advocacy behaviours - the DOCNAB subscale
4. Conceptualising demographic factors that influence nursing advocacy behaviours relevant to this study, using relevant literature findings and expert opinion – Demographic factors
5. Conceptualising items relevant to types of nursing advocacy behaviours involved in facilitating patient referrals to SPCS, using relevant literature findings and definitions from APPC survey instrument – NAA-PCR subscale
6. Expert review of survey content (n = 6)
− Assess content validity of new questionnaire, using an evaluation form − Suggested changes reviewed and applied in consultation with principal and associate supervisors
7. First modification of the items in the survey instrument
8. Pilot testing of instrument (n = 6)
− Assess face validity of modified survey instrument, by completing an evaluation form − Identify whether any navigational problems exist, by completing online questionnaire − Verify data output matches the contingency instructions provided in the online questionnaire − Suggested changes reviewed and applied in consultation with principal and associate supervisors
9. Final modification of the items in the survey instrument
48 Chapter 4: Stage One Methods & Results
4.3.1 Development of Nursing Advocacy Actions taken to facilitate Palliative Care Referrals (NAA-PCR) subscale
Despite being considered a core component of nursing (Nursing and Midwifery
Board of Australia, 2016), nursing advocacy has been poorly conceptualised in the
literature (Vaartio & Leino-Kilpi, 2004; Vaartio et al., 2009a). Nursing advocacy is
not a single action (Vaartio, Leino‐Kilpi, Salanterä, & Suominen, 2006). Limited
evidence defines the process inconsistently with few descriptions of specific nursing
advocacy practices (Vaartio & Leino-Kilpi, 2004; Vaartio-Rajalin & Leino-Kilpi,
2011). The lack of consensus on what nursing advocacy encompasses has resulted in
difficulties in its operationalisation (Vaartio et al., 2009a).
There are limited descriptions of nursing advocacy activities in oncology
and/or haematology settings within the literature (Gosselin-Acomb et al., 2007;
Pavlish & Ceronsky, 2007, 2009; Vaartio-Rajalin & Leino-Kilpi, 2011). One
researcher has completed seminal work, providing a comprehensive analysis of
nursing advocacy behaviours in procedural pain care. This work has been presented
in a thesis and in several papers including a literature review, concept clarification
with patients, medical and surgical nurses, psychometric testing of the APPC survey
instrument, and a cross-sectional study (Vaartio, 2008; Vaartio et al., 2009a, 2009b;
Vaartio et al., 2006; Vaartio, Leino‐Kilpi, Suominen, & Puukka, 2008). Importantly,
Vaartio’s work identified nursing advocacy as a series of actions involving three
types of nursing advocacy behaviours: analysing, counselling and responding
(Vaartio, 2008).
Since then, Vaartio-Rajalin and Leino-Kilpi (2011) have conducted a literature
review on the role of nurses as patient advocates in the oncology setting and
compared their review findings to nursing advocacy activities previously described
by Vaartio (2008) and Vaartio et al. (2009b). Their comparative literature review
confirms nurses working in oncology perform similar types of nursing advocacy
behaviours to nurses providing procedural pain care (Vaartio, 2008; Vaartio-Rajalin
& Leino-Kilpi, 2011). Thus, this study chose to conceptualise survey items for the
NAA-PCR subscale using Vaartio (2008) definitions for three distinct types of
nursing advocacy behaviours: analysing, counselling and responding behaviours.
Analysing activities were defined as assessing a patient’s care preferences and
self-determination preferences, such as assessing their healthcare needs (Vaartio et
Chapter 4: Stage One Methods & Results 49
al., 2009b; Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011). Counselling
activities encompassed nurses providing advice and support to patients about their
care and communicating any identified healthcare preferences to other members of
the healthcare team and/or the patient’s support network (Vaartio et al., 2009b;
Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011). Examples of counselling
activities include providing patients with healthcare information to promote them to
make informed decisions about their treatment plans and communicating educational
needs to other nursing staff (Vaartio-Rajalin & Leino-Kilpi, 2011). Responding
activities are actions nurses take in response to patient care preferences and self-
determination preferences, such as facilitating access to comprehensive
multidisciplinary care based on their identified healthcare needs (Vaartio et al.,
2009b; Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011).
These empirically-driven categorisations of nursing advocacy activities
(analysing, counselling and responding) were used to guide the development of
nursing advocacy behaviours specifically relevant to this study (Vaartio, 2008).
Survey items for the NAA-PCR subscale were developed using at least one of the
following: (i) descriptive studies of general nursing or oncology nursing advocacy
activities; (ii) literature reviews; (ii) observational studies exploring nursing
advocacy as a concept; (iii) qualitative studies exploring nursing advocacy as a
concept; or (iv) expert opinion (applied in consultation with principal and associate
supervisors). Table 4.1 summarises the supporting evidence for the inclusion of 11
nursing advocacy behaviours in the NAA-PCR subscale of the initial NACC
questionnaire.
50 Chapter 4: Stage One Methods & Results
Table 4.1.
Categorisation of nursing advocacy behaviours
Note. D: provided definition of key constructs; L: review of literature; O: observational study; Q: qualitative study; S: recommended by supervisory team; T: thesis.
Types of nursing advocacy behaviours Classification Reasons for
inclusion Supporting evidence for nursing
advocacy behaviours Supporting evidence for nursing
advocacy behaviours in oncology setting Assess whether patients have a good understanding of their treatment options
Analysing L+Q+D+S+T (Choi, 2015; Negarandeh, Oskouie, Ahmadi, Nikravesh, & Hallberg, 2006; Vaartio, 2008; Vaartio et al., 2009a)
(Pavlish & Ceronsky, 2009; Vaartio-Rajalin & Leino-Kilpi, 2011)
Assess whether patients have a good understanding of their prognosis
Analysing Q+D+S (Choi, 2015; Negarandeh et al., 2006) (Pavlish & Ceronsky, 2009)
Ask patients to identify their goals of care Analysing Q+D+S (Choi, 2015; Pavlish & Hunt, 2012) (Gosselin-Acomb et al., 2007; Pavlish & Ceronsky, 2007)
Identify the need for patient referrals to specialist palliative care services
Analysing Q+S (Pavlish & Ceronsky, 2007)
Provide patients with information about their right to make informed decisions about their healthcare
Counselling L+O+D+Q+S+T (Baldwin, 2003; Choi, 2015; Curtin, 1979; Vaartio, 2008; Vaartio & Leino-Kilpi, 2004; Vaartio et al., 2009a)
(Gosselin-Acomb et al., 2007; Vaartio-Rajalin & Leino-Kilpi, 2011)
Provide patients with information about specialist palliative care services
Counselling Q+S (Pavlish & Ceronsky, 2009)
Empower patients to make informed decisions about their treatment options
Counselling D+L+Q+S+T (Baldwin, 2003; Choi, 2015; Vaartio, 2008; Vaartio & Leino-Kilpi, 2004)
Discuss with nursing colleagues the need to refer patients to specialist palliative care services
Counselling Q+S (Pavlish & Ceronsky, 2007)
Discuss with colleagues in the healthcare team the need to refer patients to specialist palliative care services
Counselling D+L+Q+S (Baldwin, 2003; Bu & Jezewski, 2007; Choi, 2015; Vaartio et al., 2006)
(Pavlish & Ceronsky, 2009; Vaartio-Rajalin & Leino-Kilpi, 2011)
Facilitate referral to specialist palliative care services Responding D+Q+S (Choi, 2015) (Pavlish & Ceronsky, 2007, 2009) Independently refer patients to specialist palliative care services
Responding S
Chapter 4: Stage One Methods & Results 51
4.3.2 Development of Determinants Of Cancer Nursing Advocacy Behaviours (DOCNAB) subscale
The DOCNAB subscale of the NACC questionnaire aimed to address the
research question: What are the potential behavioural determinants (as defined by
the domains of the DIBQ) influencing nurses advocating for patient referrals to
SPCS as perceived by Australian cancer nurses? Following a review of the literature,
the DIBQ was chosen as the survey instrument to guide the development of items for
the DOCNAB subscale. The DIBQ was developed using a conceptual framework
introduced in Chapter Three of this study: the original TDF (Michie et al., 2005).
This survey instrument aims to comprehensively measure the potential behavioural
determinants for any healthcare professional behaviour (Huijg et al., 2014).
Validity testing led to a re-configuration of the 12-domain TDF, which
involved the division of the ‘environmental context and resources’ domain into five
different environment-related domains: ‘innovation’, ‘socio-political context’,
‘organization’, ‘patient’ and ‘innovation strategy’ (Huijg et al., 2014; Michie et al.,
2005). In addition, ‘optimism’ was separated from the ‘beliefs about capabilities’
domain; ‘emotion’ was divided into ‘positive emotions’ and ‘negative emotions’; and
‘memory, attention and decision processes’ and ‘automaticity’ items were merged
into ‘nature of the behaviours’ domain (Huijg et al., 2014; Michie et al., 2005). This
process produced a 93-item TDF-based questionnaire that measures 18 domains of
behavioural determinants with good discriminant validity (Huijg et al., 2014; Michie
et al., 2005). The 26 theoretical constructs of the DIBQ are measured using the scales
outlined in Table 4.2.
The DIBQ (Huijg et al., 2014) can be tailored to measure the potential
determinants of any healthcare professional behaviour. Data collected using the
DIBQ can then be used to inform the development of behaviour change strategies
targeted towards improving the translation of evidence into practice (Huijg et al.,
2014). This 93-item DIBQ demonstrated good construct validity and the majority of
domains showed high internal consistency and reliability when used to measure the
factors influencing physical therapists’ implementation of physical activity
interventions (Huijg et al., 2014).
Chapter 4: Stage One Methods & Results 52
Table 4.2.
Measurement scales for the DIBQ
Domains Constructs Measurement scales Response options
D1 Knowledge; role clarity Level of agreement (strongly disagree–strongly agree)
Strongly disagree; disagree; somewhat disagree; neither agree nor disagree; somewhat agree; agree; strongly agree
D2 Skills D3 Professional roleD4 Self-efficacy; perceived
behavioural control* D5 Optimism D6 Outcome expectancies;
ReinforcementD7 Intention* D9 Innovation characteristics D10 Socio-political context D11 Organizational resources and
support D12 Patient characteristics D13 Innovation strategies D14 Subjective norm; descriptive
norm; Social support D15 Positive emotions D16 Negative emotions D17 Action planning; coping
planning D18 Automaticity; memory D4 Perceived behavioural
control* Degree of difficulty (very difficult–very easy)
Very difficult; difficult; somewhat difficult; neither difficult nor easy; somewhat easy; easy; very easy
D6 Attitude Usefulness (not useful–very useful); Worthwhile (not worthwhile at all–very worthwhile); Pleasurable (not pleasurable at all–very pleasurable); Degree of interest (not interesting at all–very interesting)
For each item: choice of seven bullet points, anchored by word descriptors at each end.
D7 Intention* Strength of intentions (not strong at all–very strong)
For each item: choice of seven bullet points, anchored by word descriptors at each end.
D8 Priority Frequency (never–always) Never; seldom; sometimes; regularly; often; almost always; always
Note. *theoretical construct measured using two different scales. From “Measuring determinants of implementation behavior: psychometric properties of a questionnaire based on the theoretical domains framework,” by J.M. Huijg et al., 2014, Implementation Science, 9, p. 6-9. Copyright [2014] by BioMed Central Ltd. Reprinted with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).
Chapter 4: Stage One Methods & Results 53
While Huijg et al. (2014) claims their approach to questionnaire development
is valid and reliable, there are limited examples of how the DIBQ has been adapted to
measure healthcare professional behavioural determinants in clinical practice
(Alqubaisi, Tonna, Strath, & Stewart, 2016; Cahir, Dombrowski, Kennedy, Sharp, &
Bennett, 2017; Huijg et al., 2015; Seward et al., 2017; Slade, Dionne, Underwood, &
Buchbinder, 2014). To date, only one study protocol could be identified (Slade et al.,
2014), and three cross-sectional studies (Alqubaisi et al., 2016; Cahir et al., 2017;
Huijg et al., 2015) have developed survey items based on the DIBQ for healthcare
settings (Huijg et al., 2014). In addition, the acceptability to healthcare professionals
of completing the 93-item DIBQ is largely unknown. One study (Alqubaisi et al.,
2016) reported the length of the survey instrument was acceptable to healthcare
professionals, and another study (Huijg et al., 2015) achieved a high response rate
(55.2%) indicating a degree of acceptability at least in some behavioural contexts.
Other limitations of the DIBQ include the need for further construct validity
testing of the domains and insufficient internal consistency values for the five
environmental-related domains. In addition, the overlapping content between some
domains may cause difficulties during multivariate analysis (Huijg et al., 2014).
Lastly, it is not feasible to construct a TDF-based questionnaire that measures all 84
theoretical constructs within the 12 domains.
Despite these limitations, the DIBQ has potential value in the context of this
present study. This validated survey instrument provides a comprehensive approach
towards measuring the potential behavioural determinants of healthcare professionals
in relation to a knowledge translation problem. Importantly, the DIBQ is based on a
rigorously developed behaviour change framework (Michie et al., 2005) and linked
to a complementary step-by-step guide for designing behaviour change interventions
(Michie et al., 2014).
Chapter 4: Stage One Methods & Results 54
4.3.3 Methods for questionnaire development
Survey development was undertaken following a three-step process:
identification of the domains of interest; item generation for each domain; and
formatting the instrument into a user-friendly format (Lynn, 1986). For inclusion in
the survey instrument, the item must fulfil at least one of the following criteria:
• Is identified from the integrative review to be a factor that influences the
decision-making process for referrals to SPCS for patients with advanced
cancer;
• Is recognised in Clinical practice guidelines for communicating prognosis
and end-of-life issues with adults in the advanced stages of a life-limiting
illness, and their caregivers (Clayton, Hancock, Butow, Tattersall, &
Currow, 2007) as a factor influencing referrals to SPCS;
• Is identified in a systematic review (Level I evidence as defined by the
National Health and Medical Research Council) to be a facilitator or
barrier towards patient referrals to SPCS;
• Is identified in a review of the literature; quantitative; or qualitative
studies as a factor influencing referrals to SPCS;
• Is, in the opinion of the research student and supervisors, an essential
factor to be included.
The initial NACC questionnaire (refer to Appendix F) consisted of 95 items
across three sections. Section one (items 1–11) measured demographic factors,
section two (items 12–13) measured the type, timing and frequency of specific
nursing advocacy behaviours relevant to this study (using NAA-PCR subscale), and
section three (items 14–95) measured the potential behavioural determinants that
influence nursing advocacy behaviours (using the DOCNAB subscale) (Huijg et al.,
2014). Table 4.3 lists the initial survey items and provides a summary of the
supporting literature as a rationale for their inclusion.
Chapter 4: Stage One Methods & Results 55
Table 4.3.
Initial NACC questionnaire items developed from multiple sources
Section of questionnaire
Questionnaire content Corresponding
items Reasons for
inclusion Supporting evidence
Demographic factors
Employment status 1 Filter question
Provides care to patients with cancer in in-patient setting
2 Filter question
Type of SPCS available 3 IR+O+S Type of SPCS available: (Bakitas et al., 2013; Hui et al., 2015; Johnson et al., 2008)
Primary focus of current nursing role 4 Provides sample profile
Years of practice as cancer nurse 5 S
Current area/s of practice 6 S
Highest level of education completed in nursing 7 S
Completion of palliative care specific education 8 G+IR+S Palliative care education/training: (Clayton et al., 2007; Johnson et al., 2011; Wentlandt et al., 2012)
History of working for SPCS 9 IR+O+S
Geographical location of workplace 10 IR+O+S Geographical location affected access and type of SPCS: (Johnson et al., 2011; Wentlandt et al., 2012)
NAA-PCR subscale
Frequency of nursing advocacy behaviours 11 D+L+Q+S Patient advocacy/nursing actions: (Baldwin, 2003; Bu & Jezewski, 2007; Choi, 2015; Curtin, 1979; Gosselin-Acomb et al., 2007; Negarandeh et al., 2006; Pavlish & Ceronsky, 2007, 2009; Pavlish & Hunt, 2012; Vaartio, 2008; Vaartio & Leino-Kilpi, 2004; Vaartio et al., 2009b; Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011)
Frequency of advocating for referrals at specific time points
Frequency of advocating for referrals under circumstances listed
12 D+G+L+O+Q+R+S
Time points of referral: (Charalambous et al., 2014; Clayton et al., 2007; Howell et al., 2011; McGrath & Holewa, 2006; Wentlandt et al., 2012)
Definition of advanced cancer: (American Cancer Society, 2016; Button, Chan, Chambers, Butler, & Yates, 2016; National Cancer Institute, 2015)
Factors Knowledge: 13-16 D+S+V Definitions of key constructs: (Cane et al., 2012; Huijg et al., 2014)
Chapter 4: Stage One Methods & Results 56
Section of questionnaire
Questionnaire content Corresponding
items Reasons for
inclusion Supporting evidence
potentially influencing cancer nurses’ behaviours; measured using DOCNAB subscale
• Procedural knowledge
• Role clarity
Skills:
• Skills
• Skill development
17-20 D+IR+O+Q+S+V Palliative care training: (Cane et al., 2012; Huijg et al., 2014; Johnson et al., 2011; Wentlandt et al., 2012)
Social/professional role and identity:
• Professional role
21-23 D+S+V Definitions of key constructs: (Cane et al., 2012; Huijg et al., 2014)
Beliefs about capabilities:
• Self-confidence
• Perceived competence
• Perceived behavioural control
24-33 D+G+IR+O+Q+S+V Perceived competence and self-confidence in palliative care skills: (Bakitas et al., 2013; Cane et al., 2012; Clayton et al., 2007; Hong et al., 2011; Huijg et al., 2014; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; Ward et al., 2009; Wentlandt et al., 2012)
Optimism:
• Optimism
34-36 D+IR+Q+S+V Optimism: (Bakitas et al., 2013; Cane et al., 2012; Clayton et al., 2007; Huijg et al., 2014)
Factors potentially influencing cancer nurses’ behaviours; measured using DOCNAB subscale
Beliefs about consequences:
• Attitude
• Outcome expectancies
• Reinforcement
37-45 D+G+IR+O+Q+S+V Beliefs about consequences of referral: (Bakitas et al., 2013; Cane et al., 2012; Clayton et al., 2007; Fadul et al., 2009; Hong et al., 2011; Huijg et al., 2014; Johnson et al., 2011; C. Smith et al., 2012)
Intentions:
• Stability of intentions
46-47 D+IR+O+Q+V Effect of working relationships on intentions: (Cane et al., 2012; Charalambous et al., 2014; Huijg et al., 2014; Johnson et al., 2011; Ward et al., 2009)
Goals:
• Priority
48-49 D+L+Q+V Priority of nursing tasks: (Cane et al., 2012; Huijg et al., 2014; Pavlish & Ceronsky, 2007; Vaartio-Rajalin & Leino-Kilpi, 2011)
Innovation:
• Innovation characteristics
50-54 D+IR+O+V Impact of innovation: (Fleuren, Wiefferink, & Paulussen, 2004; Huijg et al., 2014; C. Smith et al., 2012)
Socio-political context:
• Socio-political context
55-57 D+S+V Contextual factors: (Fleuren et al., 2004; Huijg et al., 2014)
Organization:
• Organizational resources and support
58-62 D+IR+O+Q+S+V Organisational factors: (Bakitas et al., 2013; Fleuren et al., 2004; Hong et al., 2011; Huijg et al., 2014; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; Ward et al., 2009; Wentlandt et
Chapter 4: Stage One Methods & Results 57
Section of questionnaire
Questionnaire content Corresponding
items Reasons for
inclusion Supporting evidence
al., 2012)
Patient:
• Patient characteristics
63-64 D+IR+O+Q+S+V Patient-related factors: (Fleuren et al., 2004; Huijg et al., 2014; Johnson et al., 2008; McGrath & Holewa, 2006; Wentlandt et al., 2012)
Factors potentially influencing cancer nurses’ behaviours; measured using DOCNAB subscale
Social influences:
• Subjective norm
• Descriptive norm
• Social support
69-75 D+IR+Q+S Group norms affected referral practices: (Bakitas et al., 2013; Cane et al., 2012; Fleuren et al., 2004; Johnson et al., 2011; McGrath & Holewa, 2006)
Positive emotions:
• Positive emotions
76-78 D+Q+S+V Optimism: (Bakitas et al., 2013; Cane et al., 2012; Huijg et al., 2014)
Negative emotions:
• Negative emotions
79-83 D+IR+O+Q+S+V Frustration/Emotional fatigue/burnout: (Barrett & Yates, 2002; Cane et al., 2012; Fleuren et al., 2004; Huijg et al., 2014; McGrath & Holewa, 2006; McMillan et al., 2016)
Behavioral regulation:
• Action planning
• Coping planning
84-89 D+S+V Definitions and process of patient advocacy: (Cane et al., 2012; Choi, 2015; Huijg et al., 2014)
Nature of the behaviors:
• Automaticity
• Decision-making process
90-102 D+IR+O+Q+S Reasons for referral: (Bakitas et al., 2013; Cane et al., 2012; Johnson et al., 2008; Johnson et al., 2011; McGrath & Holewa, 2006; C. Smith et al., 2012; Wentlandt et al., 2012)
Note: IR: integrative review; G: Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers; R: systematic review; L: review of literature; NAA-PCR subscale: Nursing Advocacy Actions taken to facilitate Palliative Care Referrals; O: observational study; Q: qualitative study; D: provided definition of key constructs; DOCNAB subscale: Determinants Of Cancer Nursing Advocacy Behaviours; S: recommended by supervisory team; SPCS: Specialist Palliative Care Services; V: validated survey instrument. Adapted from “Measuring determinants of implementation behavior: psychometric properties of a questionnaire based on the theoretical domains framework,” by J.M. Huijg et al., 2014, Implementation Science, 9 p. 6-9. Copyright [2014] by BioMed Central Ltd. Adapted with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).
Chapter 4: Stage One Methods & Results 58
4.3.4 Rating scales
The initial DOCNAB subscale is presented as part of the original NACC
questionnaire in Appendix F. Likert-type scales were employed to collect most
quantitative data, to allow the respondent to rate various statements, such as their
level of agreement from ‘strongly disagree’ to ‘strongly agree.’ This scale has been
widely used in survey-based research (Nardi, 2015). Visual analogue scales were
proposed to measure the degree to which respondents found advocating for patient
referrals to SPCS to be a useful or worthwhile experience. Respondents scored these
two items (refer to Appendix F, Q. 38 and Q. 39) by rating their experience on a
continuum relative to two poles. Visual analogue scales (VAS) are often used to rate
the severity of pain (Nagata, Ido, Shimizu, Misao, & Matsuura, 1996). Cella and
Perry (1986) recommend the use of VAS for the rapid assessment of feelings, when
more lengthy scales are not appropriate. The initial measurement scales and response
options for the DOCNAB subscale are presented in Table 4.4.
Chapter 4: Stage One Methods & Results 59
Table 4.4.
Measurement scales for DOCNAB subscale
Domains (related items) Measurement scales Response options
Knowledge (13–16); skills (17–20); social/professional role and identity (21–23); beliefs about
capabilities (24–29); optimism (34–36); beliefs about consequences (39–45); intentions (46–
47); innovation (50–54); socio-political context (55–57); organization (58–62); patient (63–64);
innovation strategy (65–68); social influences (69–75); behavioral regulation (84–89); and
nature of behaviors (90–94)
Level of agreement (strongly disagree–
strongly agree).
Strongly disagree; disagree; somewhat
disagree; neither agree nor disagree;
somewhat agree; agree; strongly agree
Beliefs about capabilities (30–33) Degree of difficulty (very difficult–very
easy).
Very difficult; difficult; somewhat difficult;
neither difficult nor easy; somewhat easy;
easy; very easy
Goals (48–49); positive emotions (76–78); and negative emotions (79–83) Frequency (never–always). Never; seldom; sometimes; regularly; often;
almost always; always
Beliefs about consequences (37–38) Useful (not useful–very useful).
Worthwhile (not worthwhile at all–very
worthwhile)
Rate their experience on a continuum relative
to two poles.
From “Measuring determinants of implementation behavior: psychometric properties of a questionnaire based on the theoretical domains framework,” by J.M. Huijg et al., 2014, Implementation Science, 9, p. 6-9. Copyright [2014] by BioMed Central Ltd. Adapted with permission under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/).
Chapter 4: Stage One Methods & Results 60
These measurement scales were not converted to one uniform scoring system
as previous research had already determined they had good discriminant validity
(Huijg et al., 2014) (described in Section 4.3.2). Modifications were made to the
DIBQ to measure potential behavioural determinants relevant to this study, as
recommended by the authors of the questionnaire (Huijg et al., 2014). ‘Self-
confidence’ was added to the ‘beliefs about capabilities’ domain to develop items
that could confirm and expand on findings from the integrative review. ‘Intentions’
was replaced with ‘stability of intentions’ (in the ‘intentions’ domain) to assess how
the intentions of healthcare professionals may potentially be influenced by different
clinical circumstances. Lastly, ‘memory’ was replaced with ‘decision making’ within
‘nature of the behaviours’ domain to measure whether specific referral cues influence
the referral decision-making process for cancer nurses.
The original DIBQ items for ‘positive emotions’ and ‘negative emotions’ were
replaced, as some of the feelings described were not relevant to the behaviours under
examination. New items were devised, guided by definitions of the relevant
theoretical constructs (Cane et al., 2012; Huijg et al., 2014) and relevant literature in
this area (Bakitas et al., 2013; Barrett & Yates, 2002; Fleuren et al., 2004; McGrath
& Holewa, 2006; McMillan et al., 2016). The original measurement scale (strongly
disagree–strongly agree) was replaced with a frequency scale (never–always) from
the DIBQ, which allowed respondents to score how often they felt specific emotions
when advocating for referrals to SPCS.
Modifications were also made to the environment-related items of the DIBQ to
improve their specificity for the context of this study. The developers of the DIBQ
stated items measuring the five environment-related domains (‘innovation’, ‘socio-
political context’, ‘organization’, ‘patient’ and ‘innovation strategy’) could be
improved (Huijg et al., 2014). One of the guiding frameworks for the DIBQ was the
work of Fleuren and colleagues (2004) on the determinants of innovation within
healthcare organisations. The results of their Delphi study (Fleuren et al., 2004)
identified 50 potential determinants, which guided the development of new items for
the five environment-related domains in the DOCNAB subscale. Slight modifications
were made to the wording of the remaining items of the DIBQ to measure factors
relevant to this study. Such modifications highlighted the need for validity and pilot
testing of the newly developed DOCNAB subscale.
Chapter 4: Stage One Methods & Results 61
4.4 EXPERT PANEL
It is essential to reduce systematic bias and measurement error by asking
content experts to assess the extent to which a survey instrument measures all aspects
of its key constructs (Polit & Beck, 2013). Such processes enhance rigour by
introducing design features to strengthen the measurement of the target outcomes
(Bruce, Pope, & Stanistreet, 2008; Polit & Beck, 2013). This section outlines the
methods used in obtaining an expert review of the draft survey instrument. The
methods used for face validity and pilot testing are described in Section 4.3.3.
4.4.1 Participants
For the purposes of this study, content experts were Registered Nurses who had
completed a Master’s Degree or higher level of education. In addition, content
experts were selected based on achieving one of the following criteria: (i) have
worked for a minimum of three years as a cancer nurse in an in-patient setting; (ii)
previous experience developing and testing survey instruments; or (iii) publications
in peer-reviewed journals or conference presentations on nursing advocacy or
providing palliative care in the acute cancer setting. These criteria are consistent with
the recommendations of Grant and Davis (1997) and Polit and Beck (2013). A
purposive sampling technique was used to invite 10 Registered Nurses identified as
content experts in cancer care, palliative care, nursing advocacy and/or survey
instrument development to review and provide feedback on the questionnaire. The
sample included three international experts, specialising in acute oncology nursing
care, nursing advocacy and palliative care. A minimum number of five content
experts were required as advised by Polit and Beck (2013).
4.4.2 Procedure
Content validity testing procedures were consistent with a previous survey
conducted in a similar population (Ahern, Gardner, & Courtney, 2016). Content
validity testing evaluated the clarity, relevance and appropriateness of the survey
instrument as assessed by a group of experts (Bruce et al., 2008; Polit & Beck, 2013).
The research student identified suitable content experts by employing the following
methods: (i) reviewing workplace records with Nurse Educator to identify cancer
Chapter 4: Stage One Methods & Results 62
nurses who had the relevant training and qualifications at a local hospital; and (ii)
reviewing relevant publications in refereed journals to identify experts in the fields of
interest. During November 2016, 10 content experts were sent an email invitation to
participate in content validity (refer to Appendix C). The following supporting
material was provided: participant information sheet (refer to Appendix D), clear
definition of the key constructs (nursing advocacy, advanced cancer and SPCS) and
reviewer instructions (refer to Appendix E); draft survey instrument (refer to
Appendix F); and a survey evaluation form soliciting the participant’s opinion (refer
to Appendix G). Content experts were asked to review the questionnaire and provide
written feedback by completing the survey evaluation form. A reminder email was
sent one week after the original invitation to all non-respondents (refer to Appendix
C). The content validity evaluation closed after 10 days.
4.4.3 Data management and analysis
Content validity data were collated and any suggested changes were reviewed
and applied in consultation with principal and associate supervisors. Standard
methods for measuring content validity, such as Content Validity Index (CVI) (Polit,
Beck, & Owen, 2007) and Content Validity Ratio (CVR) (Lawshe, 1975) were not
employed for this study, as repeated expert reviews were not possible due to time
constraints within the candidature.
4.5 PILOT TEST
Once content validity testing was completed, 10 cancer nurses were invited to
participate in face validity and pilot testing. Pilot testing and face validity was
performed simultaneously as the last step in survey development. Pilot testing was
performed to identify any survey navigational problems and verify the data output
was reported as intended. Face validity testing was undertaken to gain feedback
about the appearance, logical flow and ordering of survey items. Acceptability of the
survey instrument was assessed by asking participants to record the time taken to
complete the questionnaire and provide feedback about their survey experience. The
setting and sample, procedures, data management and analysis used in pilot and face
validity testing are described below.
Chapter 4: Stage One Methods & Results 63
4.5.1 The setting and sample
Face validity and pilot testing was conducted with a sample of postgraduate
nursing students at QUT who were representative of the target population. These
students worked as Registered Nurses providing care to patients with cancer in in-
patient settings. A purposive sampling technique was used to invite potential
participants to participate in the face validity and pilot test of the NACC
questionnaire.
4.5.2 Procedure
Face validity and pilot testing procedures were consistent with a previous
survey conducted in a similar population (Ahern et al., 2016). Face validity and pilot
testing were undertaken during November–December 2016. Potential face validity
and pilot test participants were provided with the following materials: email
invitation (detailing the purpose of the study) (refer to Appendix H); pilot test
instructions (refer to Appendix I); participant information sheet (refer to Appendix
J); and access to the online questionnaire. Participants completed the online
questionnaire as if they were part of the survey (pilot testing) and provided feedback
using the survey evaluation form (refer to Appendix K).
A minimum of five participants were required to provide a valid face validity
assessment (Polit & Beck, 2013). A reminder email was sent, one week after the
original invitation to all non-respondents, if the minimum sample size was not
reached (refer to Appendix H). The face validity evaluation of the survey closed after
10 days.
4.5.3 Data management and analysis
Completed evaluation forms were collated and any suggested changes were
reviewed and discussed within the research team. Pilot test data were collated using a
customised Key Survey© report and assessed to verify whether the filter and
branching questions worked as intended. Any modifications made post-face validity
and pilot testing informed the final instrument. Feedback regarding the acceptability
Chapter 4: Stage One Methods & Results 64
of the NACC questionnaire was considered by the research team when finalising the
instrument.
4.6 STAGE ONE RESULTS
4.6.1 Expert Panel
Six experts agreed to participate in the content validity phase of this study.
These experts included three cancer nurses who had all worked for > 12 years in
oncology/haematology in-patient settings. The remaining three experts were
employed in academic or research positions and their primary areas of expertise were
nursing advocacy, cancer nursing and/or palliative care.
Expert feedback resulted in minor modifications to the initial survey instrument
(refer to Table 4.5). The updated survey instrument was translated into an online
questionnaire, using Key Survey© software. Five ‘test runs’ were completed to check
the functionality, flow and appearance of the survey matched the design. Changes
made post-content validity testing were evaluated during face validity and pilot
testing.
4.6.2 Pilot Test
Six postgraduate nursing students agreed to participate in face validity and
pilot testing of the questionnaire. The six participants agreed that none of the survey
items were unclear and suggested only minor modifications to the survey instrument.
Face validity feedback is summarised in Table 4.5. These suggested changes
informed the final NACC questionnaire (refer to Appendix L). Pilot testing identified
minor suggestions to improve survey navigation which were applied by the research
student. The research student found the filter and branching questions worked as
intended. Two participants remarked the survey was ‘too long.’ In response, the
research student deleted four survey items that were considered ‘too similar’ to other
items measuring the same construct (refer to Table 4.5). The mean time taken to
complete the NACC questionnaire was 22.5 minutes with a range of 10 to 35
minutes.
Chapter 4: Stage One Methods & Results 65
Table 4.5.
Amendment report outlining changes and rationales after content and face validity testing of NACC questionnaire
Items of NACC Amendments Amendment applied Rationale
All survey items and sections of participant information sheet where the term ‘facilitate’ had been used.
• Replaced ‘facilitate’ with ‘advocate.’
Post-content validity testing Validity participants considered this term to be a clearer descriptor of the key construct.
Q1. a) “Which of the following best describes your employment status?”
• Add new response options:
o I am employed as an Enrolled Nurse
o I am employed as an Assistant in Nursing.
Post-face validity testing Nursing members in all types of positions will be invited to participate in the survey. This is a filter question; only Registered Nurses and nurse practitioners will be eligible to complete the remainder of the survey.
Q2. “In your current role, do you spend any time caring for patients with cancer in a hospital ward setting?”
• Replace ‘hospital ward’ with “in-patient setting.”
Post-face validity testing To improve the specificity of the question.
Q5. “In your workplace, is it within your scope of practice to directly refer to specialist palliative care services?”
• Added Post-face validity testing Validity feedback identified new potential behavioural determinant (i.e., scope of practice) that may influence cancer nursing role in referral.
Q13. c) “During treatment (i.e., chemotherapy or radiation therapy) that aims to provide disease control for advanced cancer”
• Minor wording changes: added ‘surgery’ and ‘immune therapy.’
Post-content validity testing To ensure all applicable treatment options are listed.
Q13. f) “When end-of-life care is imminent” • Minor wording changes: ‘end-of-life care’ replaced with ‘end of life’
Post-content validity testing This term is more appropriate for the context of the question.
Q.14 a)–j) • Changed order of survey items. Post-content validity testing Originally located at end of survey. Moved towards beginning of survey to improve logical flow of survey.
Q.14 h) “the patient/family needs spiritual support”
• Divide content of original survey item into two survey items.
Post-content validity testing Original survey item was a double-barrel question which would hinder analysis. Divided survey item content across two items.
Chapter 4: Stage One Methods & Results 66
Items of NACC Amendments Amendment applied Rationale
Q.15-16
• Changed order of survey items. Post-content validity testing Were originally located on p. 7 of survey. Moved these survey items towards beginning of survey to improve its logical flow.
Q.17 “It is my responsibility as a nurse to facilitate patient referrals to specialist palliative care services”
• Deleted Post-content validity testing Wording of this survey item was too similar to other survey items measuring professional role construct. Deleted item to reduce repetition.
Q.36 “When facilitating patient referrals to specialist palliative care services, I’m always optimistic about the future.”
• Deleted Post-face validity testing This statement was ambiguous and too similar to other survey items measuring optimism construct. Deleted item to reduce ambiguity and repetition.
Q.76–83 • Change rating scale (never–always) from 5-point Likert scale to 7-point Likert scale to measure survey items for theoretical constructs: ‘positive emotions’ and ‘negative emotions’
Post-face validity testing Rating scale changed to be consistent with how frequency is measured in other survey sections. Refer to Q. 48–49: 7-point Likert scale (never–always) used here to measure frequency, as per DIBQ.
Q. 85 “I have a clear plan under what circumstances I will facilitate patient referrals to specialist palliative care services.”
• Deleted Post-content validity testing Wording of this survey item too similar to other survey items measuring action planning construct. Deleted item to reduce repetition.
Q.91 “Facilitating patient referrals to specialist palliative care services is something I do without thinking.”
• Deleted Post-content validity testing Wording of this item too similar to other survey items measuring automaticity construct. Deleted item to reduce repetition.
Q. 93 “Do you have any other comments to make about the cancer nursing role in the referral decision-making process for specialist palliative care services?”
• Added Post-face validity testing Some participants stated it was difficult to generalize their experiences advocating for patient referrals to SPCS. These participants wanted to have the option to make additional comments. This comment box provides all survey respondents with the opportunity to provide any other relevant content to the survey.
Chapter 4: Stage One Methods & Results 67
4.6.3 Summary
The final NACC questionnaire (refer to Appendix L) consisted of 93 items
across four sections. Section one (items 1–11) measured the demographic factors,
including clinical experience, education and workplace characteristics. Section two
(items 12–13) measured the timing and frequency of nursing advocacy behaviours
during the past year, using the NAA-PCR subscale. Section three (items 14–92) used
the DOCNAB subscale to measure potential behavioural determinants that influence
nurses advocating for patient referrals to SPCS. Section four (item 93) allowed
respondents to contribute any other relevant information to this study.
Chapter 5: Stage Two Methods 69
Stage Two Methods
5 STAGE TWO METHODS: MAIN STUDY
5.1 INTRODUCTION
This chapter outlines Stage Two of the research plan—measuring the advocacy
actions taken by cancer nurses during the palliative care referral decision-making
process and the potential behavioural determinants and demographic factors
influencing these actions. This stage of the study involved a cross-sectional survey of
cancer nurses using the NACC questionnaire introduced in Chapter Four. This
chapter details the aims, setting, sample, design, procedure, data management, data
analysis and ethical considerations for the cross-sectional study.
5.1.1 Aims
For nurses providing care to hospitalised patients with cancer, the aims of the
study were to examine: (i) nursing advocacy behaviours associated with the palliative
care referral decision-making process, (ii) the frequency of nursing advocacy
behaviours, (iii) the potential behavioural determinants that influence these nursing
advocacy behaviours, and (iv) the timing of these nursing advocacy behaviours. The
study focussed on expanding understanding of the actions cancer nurses take to
advocate for the referral of patients with cancer to SPCS, the frequency and timing of
these actions, and the factors influencing these actions. Limited evidence exists about
the referral behaviours of cancer nurses towards SPCS. Thus, this study took an
exploratory approach to describe nursing advocacy behaviours in this national
sample using a cross-sectional survey.
70 Chapter 5: Stage Two Methods
5.1.2 Research questions
For nurses providing care to hospitalised patients with cancer:
Level 1 - Descriptive:
1. What is the frequency of nursing advocacy behaviours for patient referrals
to SPCS over a 12-month period?
2. What are the potential behavioural determinants (as defined by the domains
of the DIBQ) influencing nurses advocating for patient referrals to SPCS?
3. What are the most common time points for cancer nurses to advocate for
patient referrals to SPCS?
Level 2 – Bivariate:
4. What are the relationships between the demographic factors and potential
behavioural determinants that influence nursing advocacy behaviours and
the frequency of these behaviours?
Level 3 – Multivariable:
5. Can the frequency of nursing advocacy behaviours be explained by the
demographic factors and potential behavioural determinants that influence
these behaviours?
5.1.3 The setting & sample
The target population for this survey was Australian Registered Nurses who
provided care to patients with cancer in the in-patient setting. The accessible
population for this study was the membership of CNSA and HSANZ Nurses Group,
who fulfilled the following eligibility criteria:
• Currently employed as a Registered Nurse or nurse practitioner in Australia, and
• Provided care to patients with cancer in the in-patient setting
Participants were recruited from CNSA and HSANZ Nurses Group. The
CNSA consists of Enrolled Nurses, Registered Nurses, allied health professionals
Chapter 5: Stage Two Methods 71
and nursing students who are committed to promoting excellence in cancer care
through the professional contribution of nurses. The HSANZ Nurses Group consists
of Australian and New Zealand nurses who have made a commitment to promote
improved standards, interest and research in all aspects of haematology. At the time
of the survey, it was estimated that there were 1,080 and 231 Australian members in
CNSA and HSANZ Nurses Group respectively.
5.1.4 Study Design
The aims of Stage Two (refer to Section 5.1.1) were best addressed using a
quantitative approach. A qualitative interview study was not conducted as this
methodological approach was not suitable for measuring the frequency of nursing
advocacy behaviours. A cross-sectional survey is a time-efficient method to collect
data in response to the research questions outlined in Section 5.1.2. The cross-
sectional survey is a structured process designed to gather a representative picture of
the characteristics and perspectives of a sample using standardised questions.
Distinct to face-to-face structured interviews, quantitative surveys aim to explore
larger samples in a more cost-effective manner using close-ended questions.
Since the 1930s, special-purpose surveys have been widely used to address
information gaps in USA census data (Fowler, 2013). Surveys are commonly
employed to measure public opinion, political perceptions or consumer preferences
about products via newspapers, magazines, telephone, face-to-face or online (Fowler,
2013). In this study, a cross-sectional survey addressed a knowledge gap identified
by the integrative review, by examining the specific actions cancer nurses take to
advocate for patient referrals to SPCS, and the factors influencing these actions.
Where good cross-sectional survey design is employed it can produce a standardised
measurement of the perspectives of a specific population at one point in time (Nardi,
2015). This method is ideal for sensitive and personal topics and to gather
information from participants located in a geographically vast area, whilst
guaranteeing anonymity (Nardi, 2015).
Cross-sectional quantitative surveys are not without their disadvantages.
Surveys that lack methodological rigour will produce erroneous data (Fowler, 2013).
Potential limitations include: cross-sectional sampling method; the self-reporting
72 Chapter 5: Stage Two Methods
response method; reading ability, language, age and education level of the
respondents; restrictive nature of closed-ended questions; low return rates associated
with web-based surveys; unable to utilising probing questions; unable to confirm
respondent identity; potential to misinterpret questions; and survey length may
potentially affect survey completion rates and accuracy of responses (Fowler, 2013;
Nardi, 2015). These potential limitations were considered in the development of the
cross-sectional survey for this study. The guide to quantitative survey methods,
developed by Nardi and colleagues (2015) was used to guide the development of a
survey instrument for this study. This text provided a practical approach to designing
a quantitative survey, from developing the research questions to designing and
analysing the results of the questionnaire.
5.1.5 Procedure
During January 2017, an invitation email to participate in this survey was
simultaneously distributed by administration officers of CNSA and HSANZ to their
memberships. A hyperlink to the participant information sheet outlining the purpose,
benefits and risks of this study was contained within the email invitation. To
distribute the online survey, a hyperlink to the online survey in the form of a master
URL was used. Use of a master URL permits the survey to be completed multiple
times on the same computer. This survey function was activated to allow Registered
Nurses to use the same computer to complete the survey as computers are often
shared in the clinical setting.
Participants completed and submitted the DOCNAB questionnaire online. To
achieve a maximal response rate, a reminder email was sent to all potential
participants two weeks after the original invitation. The survey was available online
for three weeks.
Filter questions were used to automatically direct those who did not meet the
eligibility criteria (outlined in Section 5.1.3) to the ‘thank you’ page of the survey.
Branching logic was employed to ensure only those respondents who confirmed
specific details (e.g., employment status, previously worked for SPCS) were asked
the applicable sub-questions. Survey design ensured respondents had to provide a
response to each item to progress to the next page. Respondents could not go back
Chapter 5: Stage Two Methods 73
and change their answers after advancing to the next survey page. The survey was
divided into 28 pages, including a ‘thank you’ page. Upon completion of the survey,
respondents were provided with the option of entering a lucky prize draw (i.e. chance
to win one of five Coles Group & Myer gift cards, valued at $50 each).
5.1.6 Data management
The survey data were collected and stored using Key Survey© Version 8.7.5
(WorldAPP Key Survey, 2015). Quantitative data were managed using the export
functions of Key Survey© and several pre-determined coding procedures. Free-text
data collected from the open-ended question (refer to Appendix L, Q. 93) were
collected to inform a future study that was not within the scope of this Masters
project. A log of decisions regarding data cleaning was maintained. An Australian
Bureau of Statistics (ABS) Remoteness Area (RA) code was manually allocated to
the workplace postcode (refer to Appendix L, Q. 11) of each respondent to identify
their geographical location (Australian Bureau of Statistics, 2013). These RA codes
were applied using an address coding tool on the Australian Government Department
of Health website (Australian Government Department of Health, 2016). Once the
RA code had been allocated, all workplace postcodes were deleted from the database
to protect the identity of participants.
5.1.7 Descriptive statistical analysis
Survey data were analysed using IBM SPSS® Statistics Version 23. Available
case analysis was performed for descriptive data, which is consistent with Pigott
(2001) recommendations and similar studies (Barrett & Yates, 2002; Wallace et al.,
2015). The continuous variables were the three summated scales for nursing
advocacy behaviours (analysing, counselling and responding), years of experience as
cancer nurse, years of experience as SPCS nurse and Likert scales for 18 DIBQ-
based domains (DOCNAB subscale). Measure of central tendency and dispersion
were analysed by calculating the mean, median, 5% trimmed mean, range,
interquartile range and standard deviation for each continuous variable. Data for the
Likert scales in section three of the NACC questionnaire were analysed individually,
using counts, percentages and frequency distributions.
74 Chapter 5: Stage Two Methods
Data were classified as normally distributed if they met the assumptions of the
central limit theorem (Field, 2013), sampling distribution was within 3+ standard
deviations (SD) of the mean (Nardi, 2015); skewness and kurtosis values were within
+3 and mean, median and mode values were approximately equal. Descriptive
statistics and boxplots were assessed to identify any extreme values or outliers.
Continuous variables were reported as means and SD if data were normally
distributed. However, if data were not normally distributed, median and range were
reported. Frequency of advocating for referrals at specific time points and frequency
of nursing advocacy behaviours (refer to Appendix L, Q. 12 and Q. 13) were scored
never–always (scoring system: never = 0, rarely = 1, sometimes = 2, often = 3,
always = 4). Three summated scales consisting of types of nursing advocacy
behaviours were formed on the basis of previous research: analysing, counselling
and responding (refer to Table 4.1) (Vaartio et al., 2009a, 2009b; Vaartio-Rajalin &
Leino-Kilpi, 2011). Mean frequency score, actual and potential range were calculated
for each summated scale.
Items in the DOCNAB subscale were analysed as outlined by the developers of
the DIBQ who published their analysis methods in Huijg et al. (2015). Mean scores
and Cronbach’s alpha values were calculated for each group of survey items
measuring the 18 domains of DIBQ (Huijg et al., 2015). Mean scores for each
domain were interpreted as a positive/negative influence on cancer nurses advocating
for patient referrals to SPCS in in-patient setting, as recommended by Huijg et al.
(2015). Cronbach’s alpha values provided a measure of internal consistency for each
DIBQ-based domain in the DOCNAB subscale for comparison with the original study
(Huijg et al., 2014). Data from the categorical variables were analysed individually,
using counts, percentages and frequency distributions. Categorical variables
included: employment status, type of SPCS available, primary focus of nursing role,
current area/s of practice, highest level of education completed in nursing, education
completed in palliative care, previously worked for SPCS, within scope of practice to
directly refer and remoteness of workplace location.
5.1.8 Bivariate statistical analysis
Bivariate statistics were used to describe the relationships between each
independent (18 DIBQ-based domains, 11 demographic-based factors) and each
Chapter 5: Stage Two Methods 75
dependent (summated scales for frequency of analysing, counselling and responding
behaviours) variable. The 11 demographic factors included: employment status,
primary focus of current nursing role, workplace location, postgraduate nursing
education, palliative care specific education, nurse practitioner endorsement, within
scope of practice to refer to SPCS, type of SPCS available in workplace, previously
worked for SPCS, years of experience as cancer nurse and years of experience as
SPCS nurse. For the purposes of bivariate analyses, some variables were transformed
in order to combine categories and create dichotomised variables. For instance, the
variable, types of palliative care specific education completed was dichotomised into
completed any palliative care specific education and did not complete any palliative
care specific education.
The 18 DIBQ-based domains were knowledge, skills, social/professional role
and identity, beliefs about capabilities, optimism, beliefs about consequences,
intentions, goals, innovation, socio-political context, organization, patient,
innovation strategy, social influences, positive emotions, negative emotions,
behavioral regulation and nature of behaviors. To reduce the likelihood of model
overfitting, all 18 DIBQ-based domains were transformed into three exclusive
summated scales—total capabilities, total opportunities and total motivations
score—based on the COM-B model (Michie et al., 2011). The amount of data
missing about relationships between variables and missing data patterns were
measured using case processing summaries in SPSS® (Pallant, 2016; Pigott, 2001).
Due to the exploratory nature of this study, if a respondent missed all items in at least
one domain of interest, all their responses were excluded from bivariate and
multivariate analysis.
Pearson correlation coefficient tests were calculated to measure the relationship
between an independent and dependent variable, where both were measured as
continuous variables. T-tests were calculated to measure the relationship between a
continuous dependent variable and a categorical independent variable with two
groups. When measuring the relationship between a continuous dependent variable
and a categorical independent variable with three or more groups, an analysis of
variance (ANOVA) was conducted.
Plots were used to examine the relationships between variables and identify
outliers. Scatterplots were used to display two continuous variables, whereas side-by-
76 Chapter 5: Stage Two Methods
side box plots were used to examine continuous outcomes with categorical groups. If
scatterplots and parameter estimates indicated a quadratic relationship may exist
between variables, regression modelling (y = x + x2) was undertaken to determine the
nature of the relationship. If outliers were identified, a sensitivity analysis was
undertaken and models were run with and without outliers. Bootstrapping was
employed to provide reliable parameter estimates (bootstrapping: calculated 1000
bootstrap samples with a 95% bias corrected and accelerated confidence interval)
(Field, 2013). If there were no appreciable differences between original parameter
estimates and bootstrapped parameter estimates, only original results were reported.
For each of the bivariate statistical tests undertaken, a p-value of less than 0.05 was
selected as the cut-off point for reporting statistical significance (Nardi, 2015).
Significant influencing domains and factors (p < 0.05) identified in the bivariate
analysis informed subsequent multivariable modelling.
5.1.9 Multivariable statistical analysis
Multiple linear regression (n = 110) was conducted to determine the factors
that best explain the frequency of cancer nursing advocacy behaviours and the
relative contribution of each of the factors (Field, 2013; Pallant, 2016). Three
summated scales for self-reported frequency of cancer nursing advocacy behaviours
were entered as the dependent variables (analysing, counselling and responding
behaviours). As recommended by Pallant (2016), sound theoretical reasoning
informed this multivariate analysis plan. The criteria for selection of independent
variables from the bivariate analyses for inclusion in the multivariate analyses were
based on the following: a p-value of < 0.05 for bivariate relationships with at least
two of the dependent variables (summated scales for analysing, counselling and
responding behaviours).
The cases-to-independent variables ratio for this sample (n = 110, 7
independent variables) was sufficient for testing the multiple correlation for all
multivariate models, based on a formula (N > 50 + 8m (where m = number of
independent variables)) recommended by Tabachnick (2013). Assumptions for
multiple linear regression models were assessed as outlined by Field (2013). All
selected independent variables were initially entered into standard multiple linear
regression for each of the dependent variables. Outliers were identified by assessing
Chapter 5: Stage Two Methods 77
casewise diagnostics and scatterplots of standardised residuals for cases outside of ±
3.3 for all regression models (Tabachnick, 2013). Bootstrapping was employed to
provide reliable parameter estimates when assumptions were not met (bootstrapping:
calculated 1000 bootstrap samples with a 95% bias corrected and accelerated
confidence interval) (Field, 2013). If there were no appreciable differences between
original parameter estimates and bootstrapped parameter estimates, only original
results were reported. Backward stepwise regression was chosen as the method of
analysis as it is well suited to exploratory model building, minimises suppressor
effects and does not require any theoretical or empirical grounds for entering
variables in a specific order (Field, 2013; Pallant, 2016). All selected independent
variables were simultaneously entered into a regression model and sequentially
removed if they met the set removal criteria (i.e., remove independent variable with
smallest partial correlation with the dependent variable). For each successive
regression model, the independent variable that made the least contribution to the
model was removed and a new model was calculated with the remaining variables
(Field, 2013). This process was repeated until no variables in the equation met the
removal criteria (Field, 2013; Pallant, 2016). The final model chosen to explain how
demographic factors and behavioural determinants influence each of the dependent
variables (frequency of analysing, counselling and responding advocacy behaviours)
was the most parsimonious model, assessed using criteria outlined by Field (2013).
5.2 ETHICAL CONSIDERATIONS
A low and negligible risk ethics application was submitted to QUT Human
Research Ethics Committee (UHREC) on 26th September 2016 and approved on
10th November 2016 (refer to Appendix M). Minor amendments to the survey
instrument and related participant information sheets were approved on 19th
December 2016 (refer to Appendix N). In addition, the research student sought in-
principle agreement to distribute this questionnaire via the memberships of CNSA
and HSANZ Nurses Group. The questionnaire was assessed prior to distribution by
CNSA Research Standing Committee to ensure it met membership requirements.
Both professional societies agreed to distribute the questionnaire (refer to Appendix
O and Appendix P).
78 Chapter 5: Stage Two Methods
Care was taken during the planning and conduct of this study to maximise the
benefits of the study and minimise any potential risks (NHMRC, 2007/2014 update).
Ethical considerations specific to this study included: the potential risk of discomfort
to participants caused by reviewing or completing some of the survey items; the
possible inconvenience of completing a survey; consent, anonymity and
confidentiality; any pre-existing relationships between validity and pilot test
participants and members of the research team; secure storage of data; and
dissemination of findings. These potential risks were outlined to participants in the
participant information sheet for each phase of the study.
Potential risks were minimised by employing the following strategies.
Participation in all study phases was voluntary and participants could withdraw at
any time without penalty. Participants were provided with ample time to complete
the survey evaluation form and/or online questionnaire. Participants were assured
anonymity and confidentiality. Consistent with National Health and Medical
Research Council (NHMRC) guidelines (2007), identifying data (i.e., the workplace
postcode of participants) were assigned a code during data analysis and then deleted
from the dataset.
The names of individual persons were not required during any phase of this
study. However, potential face validity participants were identified by the research
student and invited to participate in pilot testing of the initial NACC questionnaire.
To ensure participant autonomy and confidentiality, the face validity and pilot test
participant information sheet clearly stated the decision to participate or not
participate would in no way impact on participants’ current or future relationships
with the Master of Applied Science (Research) student, supervisory team or QUT.
Lucky prize draw data were stored separately to the questionnaire data. The
lucky prize draw data were stored on a password-protected database with access
limited to research team only. Records relating to the management and the conduct
of the lucky prize draw will be retained for five years, in accordance with QUT OREI
Guideline – Research Methods – Incentivising Participants – Game of Chance and
Game of Skill (2015). Winners of the lucky prize draw were notified using the email
addresses provided by the participants. Once the winners were notified and provided
with their prize, individually identifiable data collected for the lucky prize draw were
permanently deleted from the system.
Chapter 5: Stage Two Methods 79
The management and the storage of data for this study conformed to the
requirements of the NHMRC National Statement on Ethical Conduct in Human
Research guidelines (NHMRC, 2007/2014 update). Hardcopy research data were
stored in a locked filing cabinet. All electronic data were de-identified and collected
on a password-protected database (Key Survey©) with access limited to members of
the research team. Data used in conference presentations and publications were
reported as aggregate data to ensure confidentiality. After aggregate results have
been published in a peer-reviewed journal, a summary of results will be sent to the
administration officers of CNSA and HSANZ for distribution to potential
participants in this study. All data will be archived after study completion and
destroyed 15 years after academic publication. By following these steps, the ethical
principles of justice, beneficence, non-maleficence and human dignity were
respected throughout this study.
5.3 SUMMARY
A quantitative approach using a cross-sectional survey design was utilised in
this study. This chapter has provided a broad overview of ethical considerations and
methods employed in each phase of this study. Subsequent chapters present and
discuss the results of the cross-sectional study.
Chapter 6: Stage Two Results 81
Chapter 6: Stage Two Results
6.1 INTRODUCTION
This chapter presents the results of the cross-sectional survey. Sample
characteristics are presented in Section 6.2. Findings are presented in sections 6.3 to
6.8. Sections 6.3 to 6.6 present the descriptive analyses. Section 6.7 presents the
results of the bivariate analyses examining the relationships between a number of
potential explanatory variables and specific cancer nursing advocacy behaviours.
Section 6.8 presents the main findings of the multivariate analyses investigating the
predictors of factors that promote cancer nurses to advocate for referrals to SPCS in
the in-patient setting.
6.2 SAMPLE CHARACTERISTICS FOR THE CROSS-SECTIONAL SURVEY
6.2.3 Demographic/education/clinical experience characteristics
A total of 1,311 cancer nurses, comprising of 1,080 CNSA members and 231
HSANZ Nurses Group members were invited to participate in the online survey. Of
the 154 who began the survey, 23 did not meet the inclusion criteria and one
respondent declined to participate, resulting in 130 responses for analysis
(completion rate of 9.9%). One survey response contained an anomaly in the data,
reporting zero years of experience working as a cancer nurse. The decision was made
to include this survey response in data analysis as the respondent met the study
inclusion criteria and completed all other survey items. Thus, the descriptive analysis
for this study was based on 130 respondents. A flowchart detailing survey
recruitment and responses is provided in Figure 6-1.
82 Chapter 6: Stage Two Results
Excluded Declined to be contacted for
research purposes n = 0
CNSA members
n = 1,080
HSANZ Nurses Group Australian members
n = 231
Responded to online survey n = 154
Invited to participate via email
Initial invitation: n = 1,311 Reminder invitation: n = 1,311
Not eligible: Did not provide care to in-patients with cancer n = 22 Unemployed n = 1
Declined to consent: Declined to consent n = 1
Responses for analysis n = 130
Figure 6-1. Flowchart of survey participants.
Table 6.1 summarises the demographic, clinical experience, education and
workplace characteristics of the survey respondents. One hundred and thirty
Registered Nurses who were members of CNSA and/or HSANZ Nurses Group and
spent some time caring for in-patients with cancer completed the survey. Clinical
experience working as a cancer nurse ranged from 0 to 40 years (n = 127, M = 13.86,
SD = 8.82). The majority of respondents (n = 81/127, 63.8%) had > 10 years of
experience working as cancer nurses, which is consistent with similar studies with
Chapter 6: Stage Two Results 83
this population (Gosselin-Acomb et al., 2007; McMillan et al., 2016). The sample (n
= 125) was well-educated with 77.6% of respondents having completed postgraduate
nursing studies. The palliative care specific education levels (n = 129) varied from
having completed workshops/seminars/conferences (n = 89, 69.0%) to having
completed postgraduate palliative care studies (n = 33, 25.6%). A minority reported
they had not completed any palliative care specific education (n = 16/129, 12.4%).
Overall, the majority reported they had completed workshops/seminars/conferences
(n = 89/129, 69.0%), hospital in-service programs (n = 66/129, 51.2%) and/or self-
directed education (n = 64/129, 49.6%) on palliative care.
Respondents reported working in a variety of clinical specialties (n = 129),
including medical oncology (n = 86, 66.7%), haematology and/or bone marrow
transplant (n = 54, 41.9%), radiation oncology (n = 25, 19.4%), surgical oncology (n
= 17, 13.2%) and other areas (n = 13, 10.1%). Most respondents worked in
Queensland (n = 37/122, 30.3%), New South Wales (n = 26/122, 21.3%) or Victoria
(n = 24/122, 19.7%), with the remaining respondents practicing in other Australian
states or territories (n = 35/122, 28.7%). The majority of participants worked full-
time (n = 79/130, 60.8%), were employed in major cities in Australia (n = 92/122,
75.4%) with access to a dedicated SPCS as part of their hospital/health service (n =
113/130, 86.9%) and the scope of practice to directly refer to SPCS (n = 83/129,
64.3%). More than one third of the sample (n = 42/125, 33.6%) had previously
worked for SPCS, with median years of experience of two years (n = 40, range =
0.08–21). A higher proportion of cancer nurses had experience working for a
palliative care service in this sample when compared with a similar study (Nakazawa
et al., 2009). There was no national data available on the number or characteristics of
Australian nurses working in oncology and/or haematology settings to enable
comparison with data from the current study. Similarly, CNSA and HSANZ do not
collect data on the characteristics of their memberships to enable assessment of the
representativeness of the sample in this study. The notable number of participants
who had previously worked in a palliative care service does suggest, however, that
the respondents in this study are likely to have more experience and a stronger
interest in palliative care issues than the general cancer nursing population.
84 Chapter 6: Stage Two Results
Table 6.1. Demographic characteristics of the survey respondents
Characteristics Participants
N (%)Employment status (n = 130)
Full-time
79 (60.8)Part-time 51 (39.2)
Current area of practice (n = 129)Medical oncology 86 (66.7)Haematology and/or bone marrow transplant 54 (41.9)Radiation oncology 25 (19.4)Surgical oncology 17 (13.2)Other 13 (10.1)
Primary focus current nursing role (n = 129)Clinical 95 (73.6)Education 14 (10.9)Research 8 (6.2)Management 12 (9.3)
Geographical location of workplace (n = 122)Queensland 37 (30.3)New South Wales 26 (21.3)Australian Capital Territory 4 (3.3)Victoria 24 (19.7)Tasmania 6 (4.9)South Australia 12 (9.8)Northern Territory 2 (1.6)Western Australia 11 (9.0)
Remoteness of workplace (n = 122)*Major city 92 (75.4)Inner regional 22 (18.0)Outer regional 5 (4.1)Remote 3 (2.5)
Highest level of education completed in nursing (n = 125)Hospital certificate 5 (4.0)Bachelor’s degree 23 (18.4)Postgraduate certificate 30 (24.0)Postgraduate diploma 27 (21.6)Master’s degree 40 (32.0)
Completion of palliative care specific education (n = 129)Undergraduate education 22 (17.1)Workshops/seminars/conferences 89 (69.0)Hospital in-service programs 66 (51.2)Clinical placements as an RN 29 (22.5)Self-directed education 64 (49.6)Postgraduate certificate 22 (17.1)Postgraduate diploma 7 (5.4)Master’s degree (coursework or research) 4 (3.1)Not completed any palliative care specific education
16 (12.4)
Nurse practitioner endorsement (n = 130)Yes 6 (4.6)No 124 (95.4)
Within your scope of practice to directly refer to SPCS (n = 129)
Yes 83 (64.3)No 46 (35.7)
Types of SPCS available in hospital/health service (n = 130)
Dedicated SPCS within hospital/health service 113 (86.9)Access to external SPCS 17 (13.1)
Previously worked for SPCS (n = 125)Yes 42 (33.6)No 83 (66.4)
Chapter 6: Stage Two Results 85
Characteristics Participants
Median (Range) Years of experience working as a SPCS nurse (n = 40)** 2 (0.08-21)
M (SD)
Years of experience working as a cancer nurse (n = 127) 13.86 (8.82)
Note. Because of rounding, percentages may not equal 100%; *Remoteness of workplace classified using Australian Standard Geographical Classification–Remoteness Areas (ASGC-RA) (Australian Government Department of Health, 2016); **two respondents with experience working for SPCS did complete this question; n = number of participants; M = mean; SD = standard deviation; RN = Registered Nurse; SPCS = Specialist Palliative Care Services.
86 Chapter 6: Stage Two Results
6.3 SCALE RELIABILITY AND MISSING DATA
Table 6.2 shows the Cronbach’s alpha for all domains of the DOCNAB
subscale in the NACC questionnaire. The original DIBQ assessed potential
behavioural determinants using 18 subscales (domains) and various 7-point Likert
scales (Huijg et al., 2014). Cronbach’s alpha internal consistency of the subscale
coefficients for the original DIBQ ranged from 0.68–0.93 (Huijg et al., 2014). In this
study, Cronbach’s alpha values for the 18 DIBQ-based domains of the DOCNAB
subscale ranged from 0.67 (domain patient) to 0.96 (domain behavioral regulation)
(refer to Table 6.2). These results are consistent with the internal consistency values
for the original DIBQ (Huijg et al., 2014). Cronbach’s alpha values demonstrated
good (> 0.80) or excellent (> 0.90) internal consistency for measuring 11
(knowledge, skills, social/professional role and identity, beliefs about capabilities,
goals, organization, innovation strategy, social influences, positive emotions,
behavioral regulation and nature of behaviors) domains in this study (George &
Mallery, 2003; Gliem & Gliem, 2003). All Cronbach’s alphas for the 18 domains of
the DOCNAB subscale were acceptable (> 0.70) except for the domain patient, using
the cut-off point recommended by George and Mallery (2003).
With regards to missing data, 15.4% of the sample (n = 20/130) had missing
data for at least one DIBQ-based domain. Missing data analysis showed there were
no missing data patterns between respondent groups. However, the latter sections of
the questionnaire were most likely to have missing data. In order to measure the
relationships between all potential behavioural determinants and nursing advocacy
behaviours, only complete cases (n = 110) were utilised for bivariate and multivariate
analyses.
Chapter 6: Stage Two Results 87
Table 6.2.
Descriptive statistics for all 18 DIBQ-based domains of the NACC questionnaire
Domain (number of items) n M SD α Range Skew Potential Actual
D1 knowledge (4) 120 23.30 5.23 0.93 4-28 5.0-28.0 -1.25
D2 skills (4) 118 21.19 5.22 0.86 4-28 6.0-28.0 -0.97
D3 social/professional role & identity (2) 120 13.08 1.42 0.93 2-14 4.0-14.0 -2.89
D4 beliefs about capabilities (10) 118 54.24 10.33 0.93 10-70 18.0-70.0 -0.92
D5 optimism (2) 117 11.69 1.80 0.71 2-14 5.0-14.0 -0.84
D6 beliefs about consequences (9) 114 49.85 5.73 0.78 9-63 30.0-63.0 -0.67
D7 intentions (2) 114 11.18 2.19 0.71 2-14 5.0-14.0 -0.95
D8 goals (2) 114 7.04 2.53 0.92 2-14 2.0-14.0 0.43
D9 innovation (5) 113 28.04 4.46 0.76 5-35 16.0-35.0 -0.44
D10 socio-political context (3) 113 12.77 3.44 0.76 3-21 6.0-21.0 -0.73
D11 organization (5) 113 26.38 5.75 0.85 5-35 10-35.0 -0.59
D12 patient (2) 112 8.93 3.03 0.67 2-14 2.0-14.0 -0.32
D13 innovation strategy (4) 112 16.27 5.17 0.82 4-28 4.0-28.0 -0.25
D14 social influences (7) 111 37.52 5.85 0.85 7-49 13.0-49.0 -0.85
D15 positive emotions (3) 110 15.87 3.56 0.82 3-21 8.0-21.0 -0.52
D16 negative emotions (5) 110 9.62 3.55 0.78 5-35 5.0-21.0 0.93
D17 behavioral regulation (5) 110 25.35 6.67 0.96 5-35 5.0-35.0 -0.80
D18 nature of the behaviours (13) 109 74.87 9.83 0.87 13-91 50.0-91.0 -0.54
Note. DIBQ = Determinants of Implementation Behaviour Questionnaire; NACC = Nursing Advocacy in Cancer Care questionnaire; D = domain; n = number of participants; M = mean; SD = standard deviation; α = Cronbach’s alpha.
88 Chapter 6: Stage Two Results
6.4 FREQUENCY OF NURSING ADVOCACY BEHAVIOURS FOR PATIENT REFERRALS TO SPCS OVER A 12-MONTH PERIOD
Level 1 – Descriptive: Question 1. What is the frequency of nursing
advocacy behaviours for patient referrals to SPCS over a 12-month period?
Frequency of nursing advocacy behaviours for patient referrals to SPCS was
measured using a five-point Likert scale (never–always). Advocating for patient
referrals to SPCS is not an isolated behaviour but rather a series of actions. Table 6.3
summarises the number of cancer nurses who performed specific nursing advocacy
behaviours in the past year, using the following categories and scoring system: never
(0); rarely (1); sometimes (2); often (3); and always (4). Mean frequency scores,
standard deviations and potential range are reported for all nursing advocacy
behaviours reported in the last 12 months. Three summated scales were formed on
the basis of previous research: analysing, counselling and responding behaviours
(Vaartio et al., 2009a; Vaartio-Rajalin & Leino-Kilpi, 2011). All frequency of
nursing advocacy behaviour scores were negatively skewed, except for one item:
independently refer patients to SPCS.
More than one third of the respondents (cumulative percentage: n = 905/1210,
74.79%) reported often or always performing all nursing advocacy behaviours listed
within the past year, except for the independently refer patients to SPCS item. The
three most frequently reported nursing advocacy behaviours always or often
performed were empower patients to make informed decisions about their treatment
options (n = 100/121, 82.64%), identify the need for patient referrals to SPCS (n =
98/121, 80.99%) and provide patients with information about their right to make
informed decisions about their healthcare (n = 98/121, 80.99%). In contrast, the
three least frequently reported nursing advocacy behaviours always or often
performed were provide patients with information about SPCS (n = 78/121, 64.46%),
ask patients to identify their goals of care (n = 73/121, 60.33%) and independently
refer patients to SPCS (n = 51/121, 42.15%).
Chapter 6: Stage Two Results 89
Table 6.3
Frequency of behaviours by nurses when advocating for patient referrals to SPCS in the past year
Note. Because of rounding, percentages may not equal 100%, M = mean; SD = standard deviation; SPCS = Specialist Palliative Care Services.
Types of behaviours Participants (n = 121) N (%)
M (SD) Never Rarely Sometimes Often Always Summated scores M (SD)
Potential range
Analysing
Assess whether patients have a good understanding of their treatment options 3.06 (0.95) 4 (3.3) 2 (1.7) 21 (17.4) 50 (41.3) 44 (36.4)
11.49 (3.00) 0–16 Assess whether patients have a good understanding of their prognosis 2.85 (0.89) 3 (2.5) 2 (1.7) 34 (28.1) 53 (43.8) 29 (24.0)
Ask patients to identify their goals of care 2.56 (0.92) 5 (4.1) 8 (6.6) 35 (28.9) 60 (49.6) 13 (10.7)
Identify the need for patient referrals to SPCS 3.02 (0.87) 3 (2.5) 3 (2.5) 17 (14.0) 64 (52.9) 34 (28.1)
Counselling
Provide patients with information about their right to make informed decisions about their healthcare
3.02 (0.90) 2 (1.7) 7 (5.8) 14 (11.6) 61 (50.4) 37 (30.6)
14.72 (3.45) 0–20
Provide patients with information about SPCS 2.68 (0.97) 5 (4.1) 7 (5.8) 31 (25.6) 57 (47.1) 21 (17.4)
Empower patients to make informed decisions about their treatment options 3.11 (0.86) 2 (1.7) 4 (3.3) 15 (12.4) 58 (47.9) 42 (34.7)
Discuss with nursing colleagues the need to refer patients to SPCS 2.98 (0.83) 2 (1.7) 4 (3.3) 19 (15.7) 66 (54.5) 30 (24.8)
Discuss with colleagues in the healthcare team the need to refer patients to SPCS
2.93 (0.79) 1 (0.8) 4 (3.3) 24 (19.8) 65 (53.7) 27 (22.3)
Responding
Advocate for patient referrals to SPCS 2.97 (0.84) 1 (0.8) 6 (5.0) 20 (16.5) 63 (52.1) 31 (25.6) 4.85
(1.87) 0–8
Independently refer patients to SPCS 1.88 (1.35) 26 (21.5) 26 (21.5) 18 (14.9) 38 (31.4) 13 (10.7)
90 Chapter 6: Stage Two Results
The series of behaviours involved in advocating for patient referrals to SPCS in
the in-patient setting are listed in Table 6.3. In this sample (n = 121), the two most
commonly reported types of nursing advocacy behaviours always performed were
counselling (M = 14.72, SD = 3.45, 25.95%) and analysing (M = 11.49, SD = 3.00,
24.79%) behaviours. In contrast, only 18.18% of this sample reported always
performing responding behaviours (M = 4.85, SD = 1.87). Overall, responses
indicated nurses least frequently performed a specific type of responding behaviour
with 43.0% never or rarely independently referring patients to SPCS in the past year.
6.5 FACTORS INFLUENCING NURSING ADVOCACY BEHAVIOURS
Level 1 – Descriptive: Question 2. What are the potential behavioural
determinants (as defined by the domains of the DIBQ) influencing nurses
advocating for patient referrals to SPCS?
Table 6.2 shows results for the descriptive analyses for all domains. Mean
scores indicated nurses generally had favourable perspectives about advocating for
patient referrals to SPCS. Highest mean scores were found for the domains nature of
the behaviors (M = 74.87), beliefs about capabilities (M = 54.24) and beliefs about
consequences (M = 49.85). These results indicate respondents’ individual beliefs
have a positive influence on their nursing advocacy behaviours and their recognition
of referral cues and automatic actions promote these behaviours. Lowest mean scores
were reported for the domains goals (M = 7.04), patient (M = 8.93) and negative
emotions (M = 9.62). These results suggest respondents are uncertain about whether
patient access to SPCS needs to be improved. In addition, these results indicate
respondents seldom experienced negative emotions and sometimes found other
nursing tasks were a greater priority or more urgent than advocating for patient
referrals to SPCS.
Chapter 6: Stage Two Results 91
6.6 FREQUENCY OF ADVOCATING FOR REFERRALS TO SPCS AT SPECIFIC TIME POINTS
Level 1 – Descriptive: Question 4. What are the most common time points
for cancer nurses to advocate for patient referrals to SPCS?
Table 6.4 summarises how often cancer nurses (n = 121) advocated for patient
referrals to SPCS at specific time points during the past year. Most survey
respondents always or often advocated for referral when end of life was imminent
(78.5%) and often advocated for referral when no further curative treatment could be
offered for advanced cancer (79.3%). Respondents rarely or never advocated for
referral at diagnosis of cancer, regardless of prognosis (68.6%). Respondents
generally reported more frequently advocating for patient referrals to SPCS when no
further curative treatment could be offered for advanced cancer (M = 3.09), when
compared to mean frequency scores for advocating during treatment for advanced
cancer (M = 2.18) and at diagnosis of advanced cancer (M = 2.41) (high scores
represent higher frequency of nursing advocacy behaviours performed within the
past year). Overall, there was a tendency to often or always advocate for referrals at
later stages in the disease trajectory, such as when curative treatment (79.3%) or
supportive treatments had stopped (70.3%) or when end of life was imminent
(78.5%).
92 Chapter 6: Stage Two Results
Table 6.4.
Frequency of cancer nurses advocating for patient referrals to SPCS at specific time points
Specific time points Participants (n = 121)
N (%)
M (SD) Never Rarely Sometimes Often Always
1. At diagnosis of cancer, regardless of prognosis 1.11 (0.95) 36 (29.8) 47 (38.8) 28 (23.1) 9 (7.4) 1 (0.8)
2. At diagnosis of advanced cancer 2.41 (0.96) 6 (5.0) 11 (9.1) 44 (36.4) 48 (39.7) 12 (9.9)
3. During treatment for advanced cancer 2.18 (0.92) 9 (7.4) 12 (9.9) 51 (42.1) 46 (38.0) 3 (2.5)
4. When no further curative treatment can be offered for advanced cancer 3.09 (0.95) 4 (3.3) 2 (1.7) 19 (15.7) 50 (41.3) 46 (38.0)
5. When supportive treatments have been stopped 2.98 (1.12) 6 (5.0) 5 (4.1) 25 (20.7) 34 (28.1) 51 (42.1)
6. When end of life is imminent 3.18 (1.15) 7 (5.8) 5 (4.1) 14 (11.6) 28 (23.1) 67 (55.4)
Note. Because of rounding, percentages may not equal 100%; M = mean; SD = standard deviation; SPCS = Specialist Palliative Care Services.
Chapter 6: Stage Two Results 93
6.7 RELATIONSHIPS BETWEEN DEMOGRAPHIC FACTORS, POTENTIAL BEHAVIOURAL DETERMINANTS AND NURSING ADVOCACY BEHAVIOURS
Level 2 – Bivariate: Question 5. What are the relationships between the
demographic factors and potential behavioural determinants that influence
nursing advocacy behaviours and the frequency of these behaviours?
In Chapter Two, the 14 domains of the refined TDF were linked to three
categories of potential behavioural determinants: capabilities, opportunities and
motivations (refer to Table 2.1) (Cane et al., 2012; Michie et al., 2014). For the
purposes of analysis, the 18 domains of the DOCNAB subscale were grouped based
on the same principles. Huijg et al. (2014) newly developed innovation, socio-
political context, organization, patient and innovation strategy domains were re-
grouped into their original overarching domain, environmental context and resources
(Cane et al., 2012; Michie et al., 2005). Positive emotions and negative emotions
were also re-grouped into their parent domain, emotions (Cane et al., 2012; Michie et
al., 2005). The total capabilities, total opportunities and total motivations scores
were calculated using the sum of all related domain scores, as outlined by Michie et
al. (2014) (refer to Table 6.5).
Complete case analysis was employed for bivariate and multivariate analyses
as all incomplete survey responses (n = 20) had missed all items in at least one
domain of interest. Data were not normally distributed for total opportunities and
total motivations scores. Bootstrapping was performed, however as no appreciable
differences were found between original and bootstrapped parameter estimates, only
the original results are reported. Table 6.5 presents the results of the descriptive
analyses for total capabilities, total opportunities and total motivations scores. The
total capabilities, total opportunities and total motivations scores were used to
measure the relationship between potential behavioural determinants and nursing
advocacy behaviours.
94 Chapter 6: Stage Two Results
Table 6.5
Descriptive statistics for total capabilities, total opportunities and motivations scores (n = 110)
Category M 95% CI a SD Range
Potential Actual
Total capabilities score 145.00 [140.94, 149.06] 21.49 26–182 87–179
Total opportunities score 129.94 [125.90, 133.97] 21.36 26–182 54–174
Total motivations score 172.90 [169.70, 176.10] 16.95 35–245 120–203
Note. M = mean; SD = standard deviation; a 95% CI = 95% confidence interval for mean.
Table 6.6.
Correlations between the frequency of nursing advocacy behaviours and selected potential behavioural determinants and demographic factors (n = 110)
Analysing behaviours Counselling behaviours Responding behaviours
Potential behavioural determinants
Total capabilities score 0.46* 0.49* 0.55*
Total opportunities score 0.34* 0.38* 0.44*
Total motivations score 0.49* 0.52* 0.53*
Demographic factors
Years of experience as SPCS nurse (n = 36) -0.025 -0.159 -0.049
Years of experience as cancer nurse 0.25* 0.18 0.28*
Note. *p < 0.05; SPCS = Specialist Palliative Care Services.
Chapter 6: Stage Two Results 95
Pearson correlation coefficient tests were conducted to examine whether any
relationships existed between demographic factors (years of experience as cancer
nurse, years of experience as SPCS nurse), potential behavioural determinants (total
capabilities, total opportunities and total motivations scores) and the frequency of
nursing advocacy behaviours (classified as analysing, counselling and responding
behaviours). There were outliers in the data, as assessed by inspection of the
scatterplots for analysing behaviours and total opportunities score, counselling
behaviours and total opportunities score, and analysing behaviours and total
motivations score. Sensitivity analyses found no appreciable differences between
correlations with outliers and correlations without outliers. Regression models were
used to examine whether quadratic relationships existed between years of experience
as SPCS nurse and analysing, counselling and responding behaviours. Bivariate
analyses identified that these relationships were not quadratic (refer to Appendix Q,
Appendix R and Appendix S).
Table 6.6 presents a correlation matrix to illustrate associations between
demographic factors, potential behavioural determinants and analysing, counselling
and responding behaviours. Analysing behaviours were moderately positively
correlated with total capabilities score, total opportunities score and total
motivations score. Analysing behaviours also had a small positive correlation with
years of experience as a cancer nurse. Counselling behaviours were positively
correlated with total capabilities score (r = 0.49), total opportunities score (r = 0.38)
and total motivations score (r = 0.52). Responding behaviours were positively
correlated with total capabilities score (r = 0.55), total opportunities score (r = 0.44),
total motivations score (r = 0.53) and years of experience as a cancer nurse (r =
0.28).
T-tests were conducted to examine the differences between groups
(employment status, workplace location, postgraduate nursing education, palliative
care specific education, nurse practitioner endorsement, within scope to refer to
SPCS, type of SPCS available and previously worked for SPCS) (refer to Table 6.7).
There were outliers in the data for all relationships except for responding behaviours
and employment status, responding behaviours and postgraduate nursing education
and responding behaviours and previously worked for SPCS, as assessed by the side-
by-side box plots. Bootstrapping and sensitivity analyses found no appreciable
96 Chapter 6: Stage Two Results
differences between t-test results with outliers and t-tests without outliers, thus
outliers were retained for analysis. One-way ANOVA tests were conducted to
examine differences between three or more respondent groups for primary focus of
current nursing role (refer to Table 6.7). Respondents living in metropolitan areas
performed analysing, counselling and responding behaviours less frequently,
compared to respondents living in non-metropolitan areas. Those who had completed
palliative care specific education performed analysing, counselling and responding
behaviours more frequently than those who had not completed any palliative care
specific education. Respondents who reported it was within their scope of practice to
refer to SPCS also reported more frequently performing analysing, counselling and
responding behaviours compared to those who could not directly refer to SPCS.
Those who had previously worked for SPCS reported performing responding
behaviours more frequently than those who had no experience working for the
service.
Chapter 6: Stage Two Results 97
Table 6.7.
The relationships between selected demographic factors and frequency of nursing advocacy behaviours (analysing, counselling and responding) (n = 110)
Demographic factors Analysing behaviours Counselling behaviours Responding behaviours M (SD) t df M (SD) t df M (SD) t dfEmployment status
Full-time 11.70(3.07) 0.28 108 15.06(3.31) 0.60 108 5.20(1.71) 1.74 108Part-time 11.55(2.39) 14.68(3.18) 4.59(1.90)
Workplace location Metropolitan area 11.25(3.00) -2.49* 108 14.48(3.41) -2.35* 108 4.57(1.88) -5.30* 93.34 Non-metropolitan area 12.72(1.93) 16.10(2.44) 6.03(0.98)
Postgraduate nursing education Completed 11.51(2.94) 0.948 108 14.83(3.34) 0.51 108 4.99(1.85) -0.382 108Not completed 12.13(2.20) 15.22(2.92) 4.83(1.64)
Palliative care specific education Completed 11.90(2.63) 2.88* 108 15.39(2.95) 4.85* 108 5.17(1.72) 3.86* 108Not completed 9.50(3.42) 11.00(3.05) 3.17(1.47)
Nurse practitioner endorsement Completed 13.00(1.00) -1.11 108 16.00(1.58) -0.767 108 6.20(1.48) -1.59 108Not Completed 11.57(2.85) 14.86(3.30) 4.90(1.80)
Within scope of practice to refer to SPCS Yes 12.19(2.33) 3.13* 108 15.69(2.72) 3.54* 51.95 5.64(1.44) 7.00* 108No 10.46(3.37) 13.23(3.68) 3.49(1.63)
Type of SPCS available Dedicated SPCS 11.73(2.78) 0.84 108 14.91(3.34) -0.031 108 4.93(1.81) -0.41 108External SPCS 11.07(3.01) 14.93(2.69) 5.13(1.85)
Previously worked for SPCS Yes 12.25(2.52) 1.61 108 15.61(3.16) 1.59 108 5.56(1.48) 2.50* 108No 11.34(2.91) 14.57(3.26) 4.66(1.88)
M (SD) F df M (SD) F df M (SD) F dfPrimary focus of current nursing role
Clinical 12.02(2.26) 2.43 109 15.36(2.81) 2.36 109 5.10(1.70) 1.85 109 Education 11.15(3.36) 13.92(3.33) 4.85(2.12)Research 9.83(3.87) 12.50(5.32) 3.33(1.36)Management 10.20(4.52) 14.00(4.40) 4.90(2.18)
Note. *p < 0.05; M = mean; SD = standard deviation; F = f-statistic; t = t-test; df = degrees of freedom; SPCS = Specialist Palliative Care Services.
98 Chapter 6: Stage Two Results
6.8 THE RELATIONSHIPS BETWEEN SELECTED DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS AND THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS
Level 3 – Multivariate: Question 6. Can the frequency of nursing advocacy
behaviours be explained by the demographic factors and potential behavioural
determinants that influence these behaviours?
All potential behavioural determinants and demographic factors that had a
significant bivariate relationship (p value of <0.05) with at least two dependent
variables (analysing, counselling and responding behaviours) were included in all
three regression models. Scope to directly refer to SPCS, completion of palliative
care specific education, years of experience as cancer nurse, metropolitan workplace
location, total opportunities score, total motivations score and total capabilities
score were entered into each backward stepwise regression model (refer to Table 6.8,
Table 6.9 and Table 6.10). The frequency of nursing advocacy behaviours was
predicted by these included variables. Each dependent variable was measured using
the summated scales for analysing, counselling and responding behaviours described
in Table 4.1. Preliminary analyses were conducted to check for violations of the
assumptions of multiple linear regression. Relationships between independent
variables total motivations score, total capabilities score and total opportunities
score were all highly correlated, however variance inflation factor (VIF) values
indicated multicollinearity did not affect the regression models (refer to Appendix
T). Scatterplots and case wise diagnostics identified two outliers for the analysing
behaviours model and one outlier for the counselling behaviours model (refer to
Appendix U and Appendix V). Bootstrapping and sensitivity analyses were
performed to compare standard multiple linear regression models with outliers
against models without outliers for both dependent variables. There were negligible
differences between bootstrapped parameter estimates and original estimates.
Sensitivity analyses found outliers did not have a significant influence on the
explanatory power of either model, thus all outliers were retained for multivariate
analyses.
Each sequential model produced during backward stepwise regression for each
dependent variable is presented in Appendix X, Appendix Y, and Appendix Z. The
initial and final backward stepwise regression models for analysing, counselling and
Chapter 6: Stage Two Results 99
responding behaviours are presented in Table 6.8, Table 6.9 and Table 6.10
respectively. The most parsimonious model for each dependent variable was selected
as the final model.
The backward stepwise regression model statistically significantly predicted
the frequency of analysing behaviours, F(2, 107) = 20.39, p < 0.05, adj. R2 = 0.262
(refer to Table 6.8). The R2 for the overall model was 27.6%, a small effect
according to Cohen (1988). Both variables (total motivations score, scope to directly
refer to SPCS) made a statistically significant contribution to the final model. Thus,
total motivations score and scope to directly refer to SPCS explained 27.6% of the
variance in the frequency of analysing behaviours as reported by cancer nurses. A
positive relationship existed between total motivations score, scope to directly refer
to SPCS and the frequency of analysing behaviours. For example, as total
motivations score increases by one unit, the frequency of analysing behaviours
increases by 0.08 when all other variables are held constant.
The backward stepwise regression model was statistically significant for the
frequency of counselling behaviours, F(3, 106) = 20.81, p < 0.05, adj. R2 =0.353
(refer to Table 6.9). The R2 for the overall model was 37.1%, a moderate effect
according to Cohen (1988). Completion of palliative care specific education, total
motivations score and scope to directly refer to SPCS were all statistically significant
independent predictors in the final model. Together these three variables explained
37.1% of the variance in the frequency of counselling behaviours as reported by
cancer nurses. A positive relationship existed between completion of palliative care
specific education, total motivations score, scope to directly refer to SPCS and the
frequency of counselling behaviours. For instance, as completion of palliative care
specific education increases by one unit, the frequency of counselling behaviours
increases by 2.36 when all other variables are held constant.
Backward stepwise regression resulted in a statistically significant model to
predict variance in the frequency of responding behaviours, F(3, 106) = 35.80, p <
0.05, adj. R2 = 0.489 (refer to Table 6.10). The R2 for the overall model was 50.3%, a
large effect according to the guidelines of Cohen (1988). All independent variables
(metropolitan workplace location, total motivations score and scope to directly refer
to SPCS) made a statistically significant contribution to the final model. Overall, the
final model demonstrated 50.3% of the variance in responding behaviours of cancer
100 Chapter 6: Stage Two Results
nurses can be explained by their metropolitan workplace location, total motivations
score and scope to directly refer to SPCS. A positive relationship existed between
total motivations score, scope to directly refer to SPCS and frequency of responding
behaviours. For example, as scope to directly refer to SPCS increases by one unit, the
frequency of responding behaviours increases by 1.60 when all other variables are
held constant. A negative relationship was noted between metropolitan workplace
location and frequency of responding behaviours. For instance, as metropolitan
workplace location increases by one unit, the frequency of responding behaviours
decreases by 0.62 when all other variables are held constant. Regression coefficients
and standard errors for the final models of each dependent variable can be found in
Table 6.8, Table 6.9 and Table 6.10.
Chapter 6: Stage Two Results 101
Table 6.8.
The initial and final models for predictors of frequency for analysing behaviours (n = 110)
Analysing behaviours models Variable β B 95% CI SEB P-value
Model 1
Constant -0.72 [-5.82, 4.38] 2.57 0.78 Completion of palliative care specific education 0.06 0.54 [-1.09, 2.17] 0.82 0.52 Metropolitan workplace location -0.94 -0.60 [-1.75, 0.55] 0.58 0.31 Years of experience as cancer nurse 0.10 0.03 [-0.03, 0.09] 0.03 0.26 Total motivations score 0.38 0.06 [0.12, 0.11] 0.03 0.02* Total opportunities score -0.30 -0.00 [-0.04, 0.03] 0.02 0.80 Total capabilities score 0.06 0.01 [-0.03, 0.05] 0.02 0.72 Scope to directly refer to SPCS 0.12 0.75 [-0.34, 1.83] 0.55 0.17 R2 0.302 Adjusted R2 0.254 F 6.30**
Model 6
Constant -2.05 [-6.76, 2.66] 2.38 0.39 Total motivations score 0.45 0.08 [0.05, 0.10] 0.01 0.000** Scope to directly refer to SPCS 0.18 1.09 [0.08, 2.10] 0.51 0.03* R2 0.276 Adjusted R2 0.262 F 20.39**
Note. *p < 0.05; ** p < 0.001; B = unstandardized regression coefficient; F = f-statistic; SEB = standard error of the coefficient; β = standardised coefficient (beta); CI = confidence interval; SPCS = Specialist Palliative Care Services.
102 Chapter 6: Stage Two Results
Table 6.9.
The initial and final models for predictors of frequency for counselling behaviours (n = 110)
Counselling behaviours model Variable β B 95% CI SEB P-value
Model 1
Constant 0.44 [-5.12, 6.00] 2.80 0.88 Completion of palliative care specific education 0.24 2.47 [0.70, 4.25] 0.90 0.007** Metropolitan workplace location -0.05 -0.39 [-1.65, 0.86] 0.63 0.54 Years of experience as cancer nurse -0.01 -0.01 [-0.07, 0.06] 0.03 0.88 Total motivations score 0.27 0.05 [-0.00, 0.11] 0.03 0.07 Total opportunities score -0.02 -0.00 [-0.04, 0.03] 0.02 0.89 Total capabilities score 0.15 0.02 [-0.02, 0.07] 0.02 0.32 Scope to directly refer to SPCS 0.19 1.33 [0.15, 2.50] 0.59 0.03* R2 0.381Adjusted R2 0.339F 8.98**
Model 5
Constant -0.73 [-5.88, 4.41] 2.60 0.78 Completion of palliative care specific education 0.23 2.36 [0.62, 4.11] 0.88 0.008** Total motivations score 0.38 0.72 [0.04, 0.11] 0.02 0.000** Scope to directly refer to SPCS 0.22 1.54 [0.44, 2.64] 0.55 0.007** R2 0.371Adjusted R2 0.353F 20.81**
Note. *p < 0.05; **p < 0.001; B = unstandardized regression coefficient; F = f-statistic; SEB = standard error of the coefficient; β = standardised coefficient (beta); CI = confidence interval; SPCS = Specialist Palliative Care Services.
Chapter 6: Stage Two Results 103
Table 6.10.
The initial and final models for predictors of frequency for responding behaviours (n = 110)
Responding behaviours model Variable β B 95% CI SEB P-value
Model 1
Constant -2.68 [-5.34, 0.01] 1.36 0.05 Completion of palliative care specific education 0.11 0.65 [-0.21, 1.52] 0.44 0.14 Metropolitan workplace location -.13 -0.51 [-1.12, 0.10] 0.31 0.10 Years of experience as cancer nurse 0.06 0.01 [-0.02, 0.04] 0.02 0.45 Total motivations score 0.23 0.02 [-0.00, 0.05] 0.01 0.08 Total opportunities score 0.05 0.00 [-0.01, 0.02] 0.01 0.65 Total capabilities score 0.13 0.01 [0.01, 0.03] 0.01 0.32 Scope to directly refer to SPCS 0.38 1.48 [0.90, 2.05] 0.29 0.000** R2 0.53Adjusted R2 0.49F 16.17**
Model 5
Constant -3.18 [-5.84, -0.52] 1.34 0.02* Metropolitan workplace location -0.15 -0.62 [-1.21, -0.03] 0.30 0.04* Total motivations score 0.41 0.04 [0.03, 0.06] 0.01 0.000** Scope to directly refer to SPCS 0.42 1.60 [1.04, 2.16] 0.28 0.000** R2 0.503Adjusted R2 0.489F 35.80**
Note. *p < 0.05; **p < 0.001; B = unstandardized regression coefficient; F = f-statistic; SEB = standard error of the coefficient; β = standardised coefficient (beta); CI = confidence interval; SPCS = Specialist Palliative Care Services.
Chapter 7: Discussion & Conclusion 105
Chapter 7: Discussion & Conclusion
7.1 INTRODUCTION
The purpose of this study was to examine the actions cancer nurses take to
advocate for the referral of patients with cancer to SPCS, as well as the individual
and organisational factors that influence these actions. Section 7.2 discusses the
frequency of nursing advocacy behaviours for patient referrals to SPCS over a period
of 12 months. Section 7.3 outlines the potential behavioural determinants (as defined
by the domains of the DIBQ) influencing nurses advocating for patient referrals to
SPCS, as perceived by Australian cancer nurses. Section 7.4 discusses the most
common time points for cancer nurses to advocate for patient referrals to SPCS.
Section 7.5 reviews the findings of the relationships between the demographic
factors and potential behavioural determinants that influence nursing advocacy
behaviours and the frequency of these behaviours. Section 7.6 explains the key
behavioural determinants and demographic factors that influence the frequency of
nursing advocacy behaviours. The implications of this study are presented in Section
7.7. The limitations of this study are detailed in Section 7.8. The findings of this
cross-sectional study informed the development of a number of recommendations for
practice, education and further research, which are discussed in Section 7.9. Section
7.10 provides the conclusions of the study.
7.2 WHAT IS THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS FOR PATIENT REFERRALS TO SPCS OVER A 12-MONTH PERIOD?
Respondents engaged in a wide range of nursing advocacy behaviours in this
study (refer to Table 6.3). Analysing and counselling behaviours were the most
frequently reported nursing advocacy behaviours. The specific behaviours which
were most frequently employed included empower patients to make informed
decisions about their treatment options, identify the need for patient referrals to
SPCS and provide patients with information about their right to make informed
decisions about their healthcare. The nursing advocacy behaviours least frequently
106 Chapter 7: Discussion & Conclusion
undertaken were responding behaviours. Specifically, these behaviours were provide
patients with information about SPCS, ask patients to identify their goals of care and
independently refer patients to SPCS.
This is the first study to describe nursing advocacy behaviours that facilitate
patient referrals to SPCS. Few studies have reported nursing advocacy activities in
oncology and/or haematology settings (Gosselin-Acomb et al., 2007; Pavlish &
Ceronsky, 2007, 2009; Vaartio, 2008; Vaartio et al., 2009b; Vaartio-Rajalin &
Leino-Kilpi, 2011). It is also difficult to compare findings of this study with previous
studies, as previous studies have measured different nursing advocacy behaviours or
used different categorisations of behaviours to the current study.
There are a number of explanations for the high frequency of nursing advocacy
behaviours reported by cancer nurses in this study. This sample was generally highly
experienced in cancer nursing and most respondents were well-educated in nursing
and palliative care. These participant characteristics reflect the fact that the source for
this sample was professional organisations. As such, the sample reflects a group who
are likely to be more proactive about their professional development than nurses who
are not members of professional organisations. Clinical experience (Ellis & Hartley,
2009; Mallik, 1998) and adequate education (Ellis & Hartley, 2009) have previously
been identified as important antecedents for patient advocacy, although one study
reported that years of clinical experience and lack of formal advocacy training did
not influence the nurse’s ability to function as an advocate (Vaartio et al., 2006).
This sample of cancer nurses regularly acted as patient advocates by engaging
in a wide range of activities, which is consistent with similar studies (Choi, 2015;
Vaartio et al., 2009b; Vaartio et al., 2006; Vaartio-Rajalin & Leino-Kilpi, 2011).
This present study sheds new light on advocacy behaviours by distinguishing
between indirect behaviours (analysing and counselling) and more direct behaviours
that involve intervening often with the multidisciplinary team. That is, mean scores
indicate cancer nurses most commonly engaged in two types of nursing advocacy
behaviours: analysing and counselling. These types of behaviours indicate cancer
nurses predominantly focused on providing needs-based care by assessing and
identifying the needs of patients (analysing), connecting them to specific healthcare
information and representing their needs to members of the healthcare team
(counselling) (Vaartio, 2008). However, when nurses engage in responding
Chapter 7: Discussion & Conclusion 107
behaviours they are taking more direct steps to advocate for the patient’s identified
care needs. These actions can have positive or negative consequences.
Responding behaviours have previously been described as a form of risk
tasking, where the consequences of acting as a patient advocate can result in job
satisfaction, professional recognition, conflict or confrontation (Hanks, 2008;
O’Connor & Kelly, 2005). Nurses who fear negative consequences of patient
advocacy could avoid the practice altogether, even if they have identified individuals
need their assistance (Choi, 2015; Ellis & Hartley, 2009; McGrath & Holewa, 2006).
Lack of organisational support has also been identified in previous studies as a
barrier to nursing advocacy (Ellis & Hartley, 2009; Vaartio, 2008). This proposition
is reflected in this study, with over one third of respondents stating they did not have
the scope of practice to directly refer to the service. These studies provide some
explanation as to why cancer nurses reported engaging more frequently in analysing
and counselling behaviours, in an attempt to indirectly influence referral, while they
engaged less often in actions which involved direct advocacy.
7.3 WHAT ARE THE POTENTIAL BEHAVIOURAL DETERMINANTS (AS DEFINED BY THE DOMAINS OF THE DIBQ) INFLUENCING NURSES ADVOCATING FOR PATIENT REFERRALS TO SPCS?
Few studies have described the potential behavioural determinants of cancer
nursing advocacy behaviours in the acute care setting (Gosselin-Acomb et al., 2007;
Pavlish & Ceronsky, 2007, 2009; Vaartio, 2008; Vaartio-Rajalin & Leino-Kilpi,
2011). To the best of our knowledge, no studies have examined the nursing actions
taken towards facilitating referrals to SPCS for patients with cancer in the in-patient
setting.
Findings from this study indicate cancer nurses’ belief systems and the nature
of nursing advocacy behaviours had the greatest positive influence on their
behaviours. Specifically, cancer nurses generally had favourable beliefs about the
outcomes of their nursing advocacy behaviours and their ability to act as patient
advocates. In addition, respondents perceived advocacy as a routine behaviour
triggered by the needs of patients, their families, disease and/or treatment-related
characteristics.
108 Chapter 7: Discussion & Conclusion
However, domains from the DOCNAB subscale concerning the patient,
negative emotions, socio-political context, goals and innovation strategy were
perceived to have a neutral or negative influence on cancer nursing advocacy
behaviours. In other words, cancer nurses were uncertain about whether patient
access to SPCS could be improved and seldom felt distress, concern, frustration,
emotional fatigue or burnout affected their advocacy behaviours. There was also less
agreement about whether nursing staff levels, clinical guidelines and the in-patient
setting promoted or inhibited nursing advocacy behaviours. Indeed, the emphasis on
cure or prolonging life has been identified in previous qualitative studies with
oncology nurses as a barrier to integrating palliative care (Pavlish & Ceronsky, 2007,
2009). Deliberate goal-oriented care is needed to successfully integrate palliative
care into the busy high turnover acute care setting (Pavlish & Ceronsky, 2007, 2009).
In the present study, cancer nurses sometimes found other nursing tasks were a
greater priority than advocating for referrals to SPCS. These results confirm earlier
findings according to which challenges in coordinating care (Pavlish & Ceronsky,
2007, 2009) and limited time were barriers towards nurses acting as patient
advocates (Gosselin-Acomb et al., 2007; Pavlish & Ceronsky, 2007, 2009; Vaartio,
2008; Vaartio-Rajalin & Leino-Kilpi, 2011). Previous studies have attributed nursing
advocacy as the provision of exceptional care, which is difficult to role model and
apply within the time constraints of the acute care setting (Gosselin-Acomb et al.,
2007; Vaartio et al., 2006). Cancer nurses also reported less agreement as to whether
their workplace provided information about SPCS, training, routine needs-based
assessments and decision-making tools to support the referral decision-making
process. Previous studies with oncology nurses underline the need for professional
development opportunities to promote nurses to develop advocacy skills and mentor
others within the workplace (Gosselin-Acomb et al., 2007; Pavlish & Ceronsky,
2009).
7.4 WHAT ARE THE MOST COMMON TIME POINTS FOR CANCER NURSES TO ADVOCATE FOR PATIENT REFERRALS TO SPCS?
In this study, the most common time points for cancer nurses to always or often
advocate for referrals to SPCS were when end of life was imminent or no further
curative treatment could be offered for advanced cancer. Overall, most cancer nurses
Chapter 7: Discussion & Conclusion 109
often advocated for referrals towards the latter stages of the disease trajectory.
Previous studies inconsistently described cancer nursing actions towards integrating
palliative care at specific time points in the disease trajectory, making it difficult to
compare these findings with the current study (Pavlish & Ceronsky, 2007, 2009;
Vaartio-Rajalin & Leino-Kilpi, 2011).
In one previous qualitative study, few oncology nurses expressed the desire to
involve SPCS in patient care, as they believed palliative care provision was their
responsibility (Pavlish & Ceronsky, 2007). This was despite also acknowledging
barriers towards providing palliative care, such as having limited time to address
palliative care concerns and being confused about when they should introduce SPCS
(Pavlish & Ceronsky, 2007). Other studies have described oncology nursing
advocacy actions occurred at the beginning of the disease trajectory (Vaartio-Rajalin
& Leino-Kilpi, 2011) or towards the end of life (Pavlish & Ceronsky, 2009) without
any examination of the factors influencing such practices. Such haphazard practices
suggest nursing advocacy is a complex behaviour which is influenced by a range of
factors. This variation in practice means that outcomes for those living with cancer
and their families will also vary (Greer et al., 2012; Temel et al., 2011).
The most common time points for cancer nursing advocacy actions in this
study reflect the referral patterns of oncology physicians from previous studies (Dalal
et al., 2011; Reville et al., 2013; Waller et al., 2008; Weissman & Meier, 2011). In
this study, the results indicate more cancer nurses always or often advocated for
patient referrals to SPCS from the point where no further curative treatment can be
offered for advanced cancer. Possible explanations for such advocacy behaviours
include that more nurses opt to advocate for SPCS involvement during the latter
stages of the illness trajectory, when there is more certainty that the decision is
contextually congruent with the overall goal of treatment. Moreover, patients with
advanced cancer can experience an increased incidence and severity of symptoms as
their disease progresses (Chiu, Hu, & Chen, 2000; Vainio, Auvinen, & Group, 1996),
potentially providing cancer nurses with specific clinical cues to indicate the need for
SPCS involvement.
It is also possible that cancer nurses advocate for referrals to SPCS towards the
end of life, as there is less potential for professional conflict if the medical team have
already acknowledged that there are no further curative treatments. Future
110 Chapter 7: Discussion & Conclusion
observational studies are needed to examine nursing advocacy behaviours across all
stages of the illness trajectory to comprehensively identify the triggers and rationale
for introducing SPCS and the factors influencing such decisions.
7.5 WHAT ARE THE RELATIONSHIPS BETWEEN THE DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS THAT INFLUENCE NURSING ADVOCACY BEHAVIOURS AND THE FREQUENCY OF THESE BEHAVIOURS?
The conceptual framework for this study proposes that behaviour can be
explained by factors related to an individual’s physical and psychological
capabilities, social and physical opportunities within the environment, and reflective
and automatic motivations (Michie et al., 2014; Michie et al., 2011). In this study,
capability refers to a person’s knowledge, skills, behavioural regulation, memory,
attention and decision-making processes (Michie et al., 2011). Opportunity
encompasses the impact of social influences and environmental context and
resources on an individual’s behaviour (Michie et al., 2011). Motivation includes an
individual’s social/professional role and identity, beliefs about their capabilities,
optimism, beliefs about consequences, reinforcement, intentions, goals, and emotions
(Michie et al., 2011). All relevant domains were grouped using these definitions to
establish the capabilities, opportunities and motivations of cancer nurses and
measure their influence on nursing advocacy behaviours. The frequency of nursing
advocacy behaviours and the factors associated with these behaviours provided an
important opportunity to explore cancer nursing advocacy in the in-patient setting.
This section discusses the factors associated with analysing, counselling and
responding behaviours.
Analysing behaviours
Based on the bivariate analyses, clinical experience as a cancer nurse was
positively correlated with analysing behaviours, supporting previous authors who
argue that it is an antecedent for nursing advocacy (Ellis & Hartley, 2009; Mallik,
1998). Total capabilities, opportunities and motivations scores were also reported to
be independent positive predictors of analysing behaviours, reinforcing the complex
nature of advocacy behaviours. These results support the underpinning theories of
Chapter 7: Discussion & Conclusion 111
the COM-B model: if an individual has the capability, opportunity and motivation to
undertake a specific behaviour, then the behaviour is more likely to occur (Michie et
al., 2011).
Analysing behaviours rely on the nurse’s clinical expertise to assess and
identify whether a patient needs to be referred to SPCS. Thus, it is not surprising that
there was a significant mean difference in the frequency of analysing behaviours
between those who had completed palliative care specific education and those who
had not. On average, respondents who worked in metropolitan areas engaged in
fewer analysing behaviours than those living in non-metropolitan areas. These
differences between rural and metropolitan settings might reflect differing models of
care and resources. That is, on average, Australians living in rural and remote areas
do not have the same access to healthcare services as those living in metropolitan
areas (Rural Health Standing Committee, 2011). Hospitals based in metropolitan
areas have more access to multidisciplinary care. The lack of access to
multidisciplinary teams and resources could mean that nurses in nonmetropolitan
settings needed to engage in more analysing behaviours to fill gaps in available
services.
Scope of practice to refer to SPCS was also identified to have a significant
influence on analysing behaviours. Respondents who did have the scope of practice
to refer performed more analysing behaviours than those who did not. Such findings
support the conceptualisation of nursing advocacy as a series of inter-related actions
(Vaartio et al., 2006), suggesting those who can make direct referrals are more
motivated or empowered to perform related advocacy behaviours than those who do
not have the scope of practice to refer.
Counselling behaviours
According to the results of bivariate analyses, total capabilities, opportunities
and motivations scores were all significant factors associated with the frequency of
counselling behaviours. Such results support the conceptual framework for this study
– as the capabilities, opportunities and motivations of cancer nurses increase so does
the frequency of the related behaviour (Michie et al., 2011). Of note, years of
experience as a cancer nurse did not have a statistically significant association with
112 Chapter 7: Discussion & Conclusion
counselling behaviours. These results might indicate that most participants routinely
engage in counselling behaviours as part of their nursing role, such as providing
patients with information about their right to make informed decisions about their
healthcare and discuss with nursing colleagues the need to refer patients to SPCS.
However, respondents who had completed palliative care specific education
engaged in more counselling behaviours than those who had not completed any
palliative care specific education. Such results indicate that relevant education
develops greater clinical competence and confidence to act as a patient advocate
(Ellis & Hartley, 2009). Moreover, nurses who worked in metropolitan areas
performed less advocacy behaviours than those who worked in non-metropolitan
areas. As noted previously, many metropolitan hospitals in Australia provide
multidisciplinary models of care, including physiotherapists, social workers,
occupational therapists, welfare officers, dieticians and speech therapists all of which
routinely provide counselling behaviours in the acute care setting. Patients could
have more ready access to these services, thus reducing the amount of counselling
behaviours required by nurses working in metropolitan areas. Importantly, cancer
nurses who had the scope of practice to refer to SPCS engaged in more counselling
behaviours than those who did not have the scope of practice to refer.
Responding behaviours
Bivariate analyses found total capabilities, opportunities and motivations
scores were all positively correlated with the frequency of responding behaviours.
Similar to the other dependent models, these results support the conceptual
framework for this study. Thus, if no barriers exist towards responding behaviours,
individuals who feel capable and motivated about engaging in these activities will be
more likely to repeat the practice if the environment supports such opportunities.
Years of experience as a cancer nurse was another factor that was a positive
independent predictor of responding behaviours, supporting the view that those with
clinical expertise and professional competence are more likely to engage in advocacy
behaviours (Ellis & Hartley, 2009; Pavlish & Ceronsky, 2009).
As with other advocacy behaviours, on average, cancer nurses working in non-
metropolitan areas engaged in more responding behaviours than those working in
Chapter 7: Discussion & Conclusion 113
metropolitan areas. Moreover, bivariate analyses also found that cancer nurses who
had completed palliative care specific education and those who had previously
worked in SPCS engaged in more responding behaviours than those that had not, as
was the case with other advocacy behaviours. These results confirm that clinical
expertise is a prerequisite of nursing advocacy (Ellis & Hartley, 2009; Pavlish &
Ceronsky, 2009). It was also confirmed that cancer nurses who had the scope of
practice to refer to SPCS performed more responding behaviours than those without
the scope of practice to refer to the service, highlighting the importance of
organisational support in nursing advocacy practices (Ellis & Hartley, 2009; Vaartio,
2008).
Total capabilities, opportunities, and motivations scores, workplace location,
completion of palliative care specific education and scope of practice to refer to
SPCS were significantly associated with all types of nursing advocacy behaviours.
These findings underline the complexities of the behaviour under examination. It is
interesting to note that years of experience as a cancer nurse was a significant
predictor of analysing and responding behaviours only. Another factor that did not
have a significant relationship with any type of advocacy behaviour was years of
experience as a SPCS nurse. This result was surprising, however, given the small
sample size (n = 36) with SPCS experience in this study, further studies are needed.
7.6 CAN THE FREQUENCY OF NURSING ADVOCACY BEHAVIOURS BE EXPLAINED BY THE DEMOGRAPHIC FACTORS AND POTENTIAL BEHAVIOURAL DETERMINANTS THAT INFLUENCE THESE BEHAVIOURS?
This is the first cross-sectional study examining the specific actions of cancer nurses
in the referral decision-making process to SPCS and the factors that influence these
actions. Cancer nurses who had the scope to directly refer to SPCS and positive
motivations towards the service frequently engaged in all types of nursing advocacy
behaviours. The relationship between having the scope to directly refer to SPCS,
positive motivations towards the service and nursing advocacy behaviours can be
explained using the hypothesised relationships of the COM-B model (Michie et al.,
2011). That is, cancer nurses who had positive motivations and the scope to directly
refer to SPCS could perceive the act of advocating for referrals as more achievable
114 Chapter 7: Discussion & Conclusion
and thus choose to engage in these behaviours more often. Alternatively, optimism
could promote cancer nurses to consider advocacy as a worthwhile experience,
generating positive emotions in relation to this behaviour and reinforcing the benefits
of repeating such behaviours.
The completion of palliative care specific education variable also had a
significant positive relationship with the frequency of counselling behaviours. This is
not surprising, as palliative care education has positively influenced nursing
advocacy behaviours in other contexts (Thacker, 2008) and is considered to be
antecedent to effective nursing advocacy (Ellis & Hartley, 2009; Pavlish &
Ceronsky, 2009). It is noteworthy that palliative care education was not a positive
predictor for all types of nursing advocacy behaviours, possibly due to the small
number of respondents who did not complete any palliative care specific education
(n = 12/110, 10.9%).
The responding behaviours model identified a significant difference in the
frequency of responding behaviours between cancer nurses who worked in
metropolitan and non-metropolitan areas. Nurses working in metropolitan areas
engaged less frequently in responding behaviours when compared to their non-
metropolitan counterparts. One possible explanation for cancer nurses to perform less
responding behaviours in metropolitan areas when compared to non-metropolitan
areas is differing resources in these settings. Australian city-based hospitals have
greater access to a wide range of multidisciplinary services compared to non-
metropolitan hospitals, thus reducing the need for independent referrals made by
metropolitan cancer nurses to SPCS.
7.7 IMPLICATIONS
The purpose of this study was to describe the nursing behaviours involved in
advocating for patient referrals to SPCS in the in-patient setting. In addition, this
study explored the demographic factors and behavioural determinants that influence
these nursing advocacy behaviours. The theoretical and practical implications of the
results are explored in the following sections.
Chapter 7: Discussion & Conclusion 115
7.7.1 Theoretical implications
Nursing advocacy differs from advocacy roles in other settings. Advocates
within the legal system may argue a case by representing the entire needs, concerns
and interests of one individual. Nursing advocacy is often described as a series of
actions that are integral to the profession (Choi, 2015; Vaartio, 2008; Vaartio et al.,
2006). This study supports such theories, based on the range and high frequency of
nursing advocacy behaviours reported. Vaartio et al. (2006) identified nursing
advocacy as a contextually bound process, driven by the analysis of the patient’s
current needs and situation. This work led to nursing advocacy being described as a
series of dependent activities (analysing, counselling, responding, shielding and
whistleblowing) reliant on nurses empowering patients to communicate their needs
throughout the iterative process (Vaartio et al., 2006). Similar studies highlight that
good knowledge of the patient is an important precursor to providing effective
advocacy (Ellis & Hartley, 2009; Pavlish & Ceronsky, 2009). Further research is
needed to explore whether either classification of nursing advocacy behaviours is a
true reflection of the process across other healthcare settings.
The existence of nursing advocacy roles is arguably based on the assumption
that the union of two marginalised groups (nurses and patients) within the healthcare
system results in patient empowerment. Critics have questioned how nurses can
empower patients when their profession lacks authority and autonomy within the
healthcare system (Mallik, 1998). Nursing advocacy also assumes that all patients are
vulnerable and unable to voice their own concerns and wishes about their healthcare,
which may not reflect reality. Other authors insist nurses are best placed to act as
patient advocates within the healthcare system, despite a lack of evidence to support
their case and ambiguity about their role (Choi, 2015; Vaartio & Leino-Kilpi, 2004).
This study provides preliminary insights into the cancer nursing advocacy role in the
referral decision-making process to SPCS.
This study makes an important contribution to existing nursing advocacy
theories, confirming cancer nurses regularly engage in analysing, counselling and
responding behaviours when advocating for referrals to SPCS. Importantly, these
results support the findings of previous studies, which identified high job motivation
(Vaartio et al., 2009b) and positive beliefs (Thacker, 2008) were associated with
nurses undertaking advocacy practices in the workplace.
116 Chapter 7: Discussion & Conclusion
This study elicited information about how often cancer nurses engage in a
series of nursing advocacy behaviours, to try and measure the phenomenon as it
occurs in practice—a series of actions that can lead to referrals to SPCS. Examining
the barriers and facilitators influencing distinct stages of the referral decision-making
process will be an important focus of future qualitative research. It is critical that
future exploratory studies focus on describing the perceptions of each key
stakeholder and the factors that promote/inhibit patient access to SPCS from their
point of view.
Behaviours do not exist in isolation (Michie et al., 2014). The referral decision-
making process is influenced by a series of behaviours from each key stakeholder –
the patient, their caregiver, their cancer nurse, their physician, and potentially other
healthcare professionals. Together these behaviours and factors influence the
decision-making process regarding whether patients with advanced cancer receive
support from SPCS. The extent to which each factor is perceived to influence the
behaviours of cancer nurses advocating for referrals to SPCS, can be used to inform a
targeted intervention to enhance their role in the future.
According to the COM-B model, behaviours are a product of the individual’s
capabilities, opportunities and motivations to undertake a specific action (Michie et
al., 2011). The findings of this study fit well with this theory, identifying the
motivations of cancer nurses as the most important behavioural determinant in the
context of advocating for referrals to SPCS. Using the BCW, these findings
substantiate the development of behaviour change interventions that aim to enhance
the motivations of cancer nurses with the intent of increasing the frequency of
advocacy activities in practice (Michie et al., 2014; Michie et al., 2011).
Future behaviour change interventions that aim to promote the cancer nurses’
role in advocating for palliative care referrals could be designed using the BCW
(Michie et al., 2014). The first step is designing a behaviour change intervention is
problem analysis, which involves assessing all relevant behaviours before selecting a
target behaviour (Michie et al., 2014). The target behaviour should be selected based
on the following considerations: likely impact of behaviour change, ease of changing
the behaviour and position of the behaviour within the system of relevant behaviours
(Michie et al., 2014). Using the BCW, the more central the target behaviour is in
relation to other related behaviours, the more likely the intervention will influence
Chapter 7: Discussion & Conclusion 117
other interdependent behaviours (Michie et al., 2014). Ultimately, the aim is to
design a behaviour change intervention that transforms the behavioural system and
reduces the risk of undesirable behaviours returning over time (Michie et al., 2014).
7.7.2 Practical implications
Based on the American Society of Clinical Oncology guidelines (Ferrell et al.,
2016), SPCS should be introduced early in disease trajectory for patients with
metastatic cancer and a high symptom burden to alleviate their suffering and improve
their quality of life. Nevertheless, several studies report referrals often occur late in
the disease trajectory or not at all (Dalal et al., 2011; Reville et al., 2013; Waller et
al., 2008; Weissman & Meier, 2011). Given the current knowledge translation
problem, it is important to consider alternative ways of coordinating and prioritising
the referral decision-making process to SPCS. Some facilities employ nurse-led
referral processes to promote patient access to SPCS (Bakitas et al., 2013). The
results of this study suggest that barriers to appropriately skilled nurses’ engaging in
palliative care referral processes need to be addressed by introducing education
processes and supportive policies. Where policies do not enable nurses to directly
refer, actions to enhance nurses’ input into the multidisciplinary referral decision-
making process are required (Pavlish & Ceronsky, 2009).
However, integrating SPCS with standard oncology/haematology care within
the multidisciplinary setting is not without its challenges. Firstly, it is necessary to
determine whether a patient’s palliative care needs can be met by the current
healthcare team. It is essential an evidence-based and structured approach is
employed when assessing the palliative care needs of patients with advanced cancer,
such as the Palliative Care Needs Assessment Tool (PC-NAT) (A Waller, Girgis,
Currow, & Lecathelinais, 2008). Once a palliative care needs assessment has been
completed, it is important to establish which needs can be met by the current
healthcare team and which needs are complex and may be better managed by SPCS.
Secondly, good multidisciplinary care prioritises the patient’s wishes and
carer’s concerns and clearly communicates the goals of care to all members of the
healthcare team in a timely manner. This is difficult to achieve in a busy, high-
turnover, acute cancer setting where competing demands and responsibilities delay
118 Chapter 7: Discussion & Conclusion
patient care, create power imbalances, and impede communication within the
multidisciplinary team. Further research is needed to develop and test
communication tools that could promote better multidisciplinary collaboration during
the referral decision-making process to SPCS.
This study confirms cancer nurses make an important contribution to the
palliative care referral decision-making process by engaging in a range of advocacy
activities. Cancer nurses often rely on their knowledge of patients to assess and
identify whether they need support from SPCS (analysing), provide relevant
information to empower patients to make informed healthcare decisions, represent
patient needs to the healthcare team (counselling), and advocate or refer to SPCS
(responding) where needed. In this study, cancer nurses most frequently identified
always advocating for referrals towards the later stages of the disease trajectory.
Based on these results, interventions to promote the introduction of needs-based
referral earlier in the disease trajectory for patients with advanced cancer are
required. As noted above, such interventions should consider strategies to reduce
unnecessary barriers to scope of practice and enhance the motivations of nurses
towards SPCS to increase the frequency of referrals to the service.
If early referral rates were to increase, SPCS need to be adequately resourced
and prepared to provide additional services. It is also important to consider that the
palliative care referral is a contextually bound process involving several key
stakeholders, warranting consideration of the problem at an individual and
organisational level. Healthcare providers need to provide the right resources,
guidelines and training opportunities to promote and support cancer nurses to
effectively engage in nursing advocacy behaviours in response to identified patient
needs (Ellis & Hartley, 2009; Vaartio-Rajalin & Leino-Kilpi, 2011).
Previous studies have shown self-confidence in initiating palliative care or
prognostic discussions was linked with physicians referring earlier and more often
(Bakitas et al., 2013; Johnson et al., 2011; McGrath & Holewa, 2006; Wentlandt et
al., 2012). Similarly, cancer nurses who had positive beliefs about their capabilities
engaged more frequently in analysing, counselling and responding behaviours.
Nevertheless, nurses who had limited time to address palliative care concerns
(Gosselin-Acomb et al., 2007; Pavlish & Ceronsky, 2007, 2009; Vaartio, 2008;
Vaartio-Rajalin & Leino-Kilpi, 2011) or feared the social consequences of patient
Chapter 7: Discussion & Conclusion 119
advocacy could avoid the practice altogether (Choi, 2015; Ellis & Hartley, 2009;
McGrath & Holewa, 2006).
These barriers towards nurses engaging in advocacy practices within the acute
care setting need to be addressed. Such results suggest that in-depth interviews with
nurses may enhance our understanding of how these factors influence nursing
advocacy behaviours. Based on the findings of this study, nurses were unsure if their
workplace provided training and decision-making tools to support healthcare
professionals to advocate for palliative care referrals where needed. Specifically,
advocacy education and training is needed to promote cancer nurses to more
frequently engage in responding behaviours. Furthermore, healthcare providers need
to drive policy change to expand the scope of practice of cancer nurses to
independently initiate referrals to SPCS, as long as adequate training and education is
provided.
7.8 LIMITATIONS OF THE STUDY
Convenience sampling of two professional nursing memberships was
employed to allow the research student to contact a large number of eligible nurses in
a time-efficient and cost-effective manner. This sampling method limits the
generalisability of these findings to the Australian cancer nursing population and
could have contributed to the low response rate for this study. While the response
rate for this study was lower than other similar studies (Gosselin-Acomb et al., 2007;
Wallace et al., 2015), it was comparable to a study that employed a similar
convenience sampling method (Kitchener, 2016). This low response rate might be
attributed to the distribution method, as web-based surveys are typically associated
with low response rates (Nardi, 2015). For this study, the eligibility criteria also
affected the response rate, as 14.9% of respondents did not meet the inclusion criteria
for this study.
The concept of nursing advocacy was explored in a specific context—cancer
nurses advocating for patient referrals to SPCS in the in-patient setting. While direct
comparisons can only be made in this context, this study provides important
foundational knowledge about the role of the cancer nurse in the referral decision-
making process to SPCS. The conceptualisation of nursing advocacy behaviours
120 Chapter 7: Discussion & Conclusion
were also limited in this study. These behaviours are not well articulated in the
literature and could involve more complex behaviours than that assessed here. As
with all cross-sectional studies, the results of this study are also prone to self-
reporting bias and recall bias (Nardi, 2015). Clearly, further observational studies of
cancer nursing advocacy behaviours are needed to expand on the current study’s
findings.
The multiple correlation matrix identified three independent variables with
substantial intercorrelations (r > 0.7): total capabilities score, total opportunities
score and total motivations score (Polit & Beck, 2013). These results indicate these
variables are not independent of each other; providing little predictive power to each
other in all the statistical models. In addition, the construction of the NACC
questionnaire prevented the inclusion of incomplete responses in bivariate and
multivariate analysis. Further psychometric testing of the NACC questionnaire is
warranted, as factor analysis and validity testing could improve the discriminant
content and construct validity of the instrument. Factor analysis and construct
validity were not undertaken in this study.
Finally, a model generated using backward stepwise regression may provide a
good fit for the sample, but not generalise well with the population (Field, 2013).
Future research should employ cross-validation methods to determine whether these
relationships exist outside of this sample.
7.9 RECOMMENDATIONS FOR FUTURE RESEARCH
Cronbach’s alpha values confirm the DIBQ constructs can be applied to cancer
nursing advocacy behaviours with high internal consistency for many domains.
However, the question remains as to whether the content and structure of the NACC
questionnaire is relevant to other samples of the cancer nursing population. While a
rigorous process informed the development of the NACC questionnaire, this
questionnaire needs further psychometric testing in other in-patient cancer care
settings. Future studies should ideally examine the perspectives of different samples
of the population to inform the selection of key constructs to be included in a similar
questionnaire.
Chapter 7: Discussion & Conclusion 121
The NACC questionnaire contained 18 DIBQ-based domains (DOCNAB
subscale) and 11 demographic-based factors to measure the influence of potential
behavioural determinants for cancer nurses when advocating for referrals to SPCS.
Data reduction techniques such as factor analysis need to be employed in future
studies to measure the interrelationships between variables and produce a more
parsimonious set of relevant factors for use in bivariate and multivariate analyses
(Pallant, 2016).
Future implementation studies should consider the motivations of cancer nurses
and their scope of practice to refer to SPCS as key behavioural determinants for
advocating for patient referrals to SPCS. Observational and qualitative studies are
needed to more fully understand the factors contributing to cancer nursing advocacy
behaviours in the in-patient setting. Finally, although the BCW recommends
analysing all relevant behaviours in context, this study only examines the
perspectives and experiences of cancer nurses. Future mixed method studies might
gain an understanding of the referral decision-making process from the perspectives
of all key stakeholders (patients, caregivers, physicians, nurses and allied health
professionals).
7.10 CONCLUSIONS
This study has provided new insight into the cancer nursing advocacy actions
taken to facilitate patient referrals to SPCS in the in-patient setting. Importantly, this
study has also advanced understanding of the behavioural determinants and
demographic factors that influence cancer nursing advocacy behaviours. Cancer
nurses engage in a wide range of behaviours to facilitate patient referrals to SPCS.
However, inconsistencies were noted in the frequency of different types of nursing
advocacy behaviours and key behavioural determinants and demographic factors
associated with these inconsistencies were identified.
While the frequency of nursing advocacy behaviours indicated respondents
considered advocacy to be an integral part of nursing, advocacy practices were
inconsistent across the illness trajectory. The tendency to advocate for referrals
towards the end of life could be explained by the curative focus of the acute care
setting. Cancer nurses also reported engaging in more analysing and counselling
122 Chapter 7: Discussion & Conclusion
behaviours than responding behaviours. These variations in advocacy practices could
be related to the negative consequences sometimes associated with nursing advocacy
or a lack of organisation support for nurses to refer to SPCS.
Cancer nurses who had positive beliefs, optimism, intentions, goals and
emotions (motivations) towards SPCS engaged more frequently in all types of
nursing advocacy behaviours. Such results indicate the cancer nurse’s belief system
is at the heart of their advocacy actions and contributes towards increasing patient
access to SPCS.
Whether cancer nurses had the scope of practice to refer to SPCS, significantly
influenced their analysing, counselling and responding behaviours. At an
organisational level, nurses are responsible and accountable for providing care that is
permitted by their workplace policy and professional registration. Practising outside
of this scope is a violation of these regulations. Organisations that permitted cancer
nurses to refer to SPCS significantly promoted nursing advocacy behaviours in this
study. Thus, policy changes that permit nurse-led referrals to SPCS will contribute to
greater patient access to the service and provide referral recipients with care in
response to their identified needs.
The findings of this study highlight that the motivations and scope of practice
of cancer nurses are key factors in the frequency of cancer nursing advocacy
behaviours. Based on these results, a number of recommendations for education,
practice and further research are provided. Nursing advocacy is a series of actions
that are integral to the profession. The nursing advocacy process is complex, relying
on the favourable beliefs and professional competence of nurses to act as an
intermediary between the patient and the healthcare team and facilitate referrals to
SPCS.
Organisational support is also needed to provide adequate advocacy training
and support to cancer nurses and permit nurse-led referral pathways to SPCS to
improve patient access to the service. With growing evidence supporting the early
integration of SPCS into the acute cancer care setting, this study focused on the
actions cancer nurses take to facilitate patient referrals to the service. Delayed or
non-referral of patients with advanced cancer to SPCS significantly impacts on the
quality of life of patients and their families. The intimate nature of the nursing role
provides frequent opportunities to effectively engage with patients and families and
Chapter 7: Discussion & Conclusion 123
develop an acute awareness of their healthcare needs over time. Nurses are well-
placed to escalate matters of concern to the treating medical team early in the disease
trajectory and advocate or refer patients to SPCS where needed.
References 125
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Appendices 137
Records identified through database searches (n = 4361)
Records after 20 duplicates removed (n = 4341)
Abstracts screened (n = 4341)
Excluded as content not relevant
(n = 4250)
Full-text articles assessed for eligibility
(n = 91)
Full-text articles excluded, with reasons (n = 79): • Content not relevant = 27
• <50% sample provided care to those with advanced cancer = 10
• <50% sample worked in acute settings = 14
• Referrals to PCU or non-acute setting = 21
• Data collected after referral = 7
Studies included in qualitative synthesis
(n = 4)
Studies included in quantitative synthesis
(includes mixed methods study) (n = 8)
Appendices
PRISMA Flow diagram
Figure A1. PRISMA flow diagram for inclusion of studies.
Appendices 139
Table B1
The behavioural analysis using the refined TDF domains linked to the COM-B model
Note. TDF = Theoretical Domains Framework; COM-B model = Capability Opportunity Motivation – Behaviour model; SPCS = Specialist Palliative Care Services. Adapted from “The behaviour change wheel: a guide to designing interventions,” by S. Michie, L. Atkins & R. West, 2014, Silverback Publishing, p. 92. Copyright [2014] by S. Michie, L. Atkins & R. West. Adapted with permission from the authors.
Components of COM-B model
TDF domains Integrative review findings relevant to each domain
Physical capability Physical skills No relevant evidence available.
Psychological capability
Knowledge Cognitive & interpersonal skills
Limited evidence indicates palliative care training can lead to an improved understanding of the principles of palliative care.
Memory, attention & decision processes
Healthcare professionals can be conflicted by the need to act on clinical referral cues when they are uncertain about the consequences of the referral.
Behavioral regulation No relevant evidence available.Social & physical opportunity
Social influences Environmental context & resources
The degree of integration between services inhibits/promotes referrals to SPCS. Access to a comprehensive well-resourced SPCS that accepted patients on chemotherapy promoted referrals to service. Group norms and power imbalances influence referral behaviours.
Reflective motivation Social/professional role & identity
Limited evidence indicates a lack of professional boundaries between services inhibited referrals to the SPCS.
Beliefs about capabilities Healthcare professionals’ degree of self-perceived competence and/or confidence in symptom management and/or palliative care discussions directly influenced referral behaviours.
Optimism Limited evidence suggests optimism directly influences their referral behaviours.Intentions Limited evidence indicates the intentions of healthcare professionals informed referral behaviours.Goals A desire to provide a concurrent model of care or receive symptom management support motivated healthcare professionals to refer to SPCS. Beliefs about consequences Healthcare professionals’ beliefs about consequences of referral informed referral behaviours.
Automatic motivation Reinforcement Limited evidence suggests access to specialist assistance motivated referrals to SPCS.
Emotions Limited evidence exists on how emotions affect referral behaviours of healthcare professionals.
Appendices 141
Email invitation, email reminder – content validity
Email invitation – content validity
Subject: Research study about cancer nurses facilitating patient referrals to specialist palliative care services
Dear [insert name],
Sarah Northfield, Associate Professor Raymond Chan, Dr John Rosenberg and Professor Patsy Yates have been working together to develop a survey that identifies the factors that influence cancer nurses facilitating patient referrals to specialist palliative care services in the in-patient setting.
As an experienced nurse with expertise in oncology and/or palliative care, we need your feedback on the draft survey instrument.
As you may know from your own research or clinical expertise in this area, early referral to specialist palliative care services (SPCS) can improve quality of life and in some cases even prolong survival for patients with advanced cancer. Nevertheless, many studies have found that healthcare professionals generally make referrals to SPCS for end-of-life care, rather than referring patients earlier in the disease process. To date, limited evidence exists about how cancer nurses contribute to the referral decision-making process to SPCS. The data collected from this survey aims to address this gap in the literature.
This research may benefit patients with cancer and their families. It may also benefit Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services.
We are inviting you to complete the attached survey evaluation form. We want to ensure this survey measures data items that are clear, relevant and appropriate to nurses caring for patients with cancer in the in-patient setting. Your assistance in evaluating whether the items and responses are clear, relevant and appropriate will contribute immensely to the success of this project.
142 Appendices
Please find attached the following resources and materials:
1. Clear definitions of the key constructs and set of instructions 2. Survey evaluation form; 3. Draft survey instrument; 4. Participant Information Sheet
Completion of the survey evaluation form is completely voluntary and there are no implications for non-respondents. Your feedback will assist in the removal of irrelevant survey items, revision of unclear or poorly worded items and/or addition of new items to the survey instrument.
We really appreciate your feedback in ensuring the actions nurses take to facilitate the referral of patients with cancer to specialist palliative care services in the in-patient setting have been described comprehensively. Your contribution will also ensure we fully capture all the organisational and personal factors that influence these actions.
Can you please return the completed content validity survey evaluation form via email - northfield.sarah@hdr.qut.edu.au by 24th November 2016. Please feel free to contact me if you have any questions about the enclosed materials.
Please note that this study has been approved by the QUT Human Research Ethics Committee (approval number 1600001019).
Many thanks for your consideration of this request.
Sarah Northfield
Master of Applied Science (Research) student
3646 2182 northfield.sarah@hdr.qut.edu.au
School of Nursing, Faculty of Health, Queensland University of Technology
Appendices 143
Reminder invitation – content validity
Subject: CLOSING SOON - Research study about cancer nurses facilitating patient referrals to specialist palliative care services
Dear [insert name],
This email is sent as a reminder. If you have already completed the survey evaluation form, I would like to thank you for your participation. If you have not yet completed an evaluation form for this survey, please review the information below.
The evaluation of this survey will close on 18th November.
Sarah Northfield, Associate Professor Raymond Chan, Dr John Rosenberg and Professor Patsy Yates have been working together to develop a survey that identifies the factors that influence cancer nurses facilitating patient referrals to specialist palliative care services in the in-patient setting.
As an experienced nurse with expertise in oncology and/or palliative care, we need your feedback on the draft survey instrument.
As you may know from your own research or clinical expertise in this area, early referral to specialist palliative care services (SPCS) can improve quality of life and in some cases even prolong survival for patients with advanced cancer. Nevertheless, many studies have found that healthcare professionals generally make referrals to SPCS for end-of-life care, rather than referring patients earlier in the disease process. To date, limited evidence exists about how cancer nurses contribute to the referral decision-making process to SPCS. The data collected from this survey aims to address this gap in the literature.
This research may benefit patients with cancer and their families. It may also benefit Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services.
We are inviting you to complete the attached survey evaluation form. We want to ensure this survey measures data items that are clear, relevant and appropriate to nurses caring for patients with cancer in the in-patient setting. Your assistance in evaluating whether the items and responses are clear, relevant and appropriate will contribute immensely to the success of this project.
144 Appendices
Please find attached the following resources and materials:
1. Clear definitions of the key constructs and set of instructions 2. Survey evaluation form; 3. Draft survey instrument; 4. Participant Information Sheet
Completion of the survey evaluation form is completely voluntary and there are no implications for non-respondents. Your feedback will assist in the removal of irrelevant survey items, revision of unclear or poorly worded items and/or addition of new items to the survey instrument.
We really appreciate your feedback in ensuring the actions nurses take to facilitate the referral of patients with cancer to specialist palliative care services in the in-patient setting have been described comprehensively. Your contribution will also ensure we fully capture all the organisational and personal factors that influence these actions.
Can you please return the completed content validity survey evaluation form via email - northfield.sarah@hdr.qut.edu.au by 18th November 2016. Please feel free to contact me if you have any questions about the enclosed materials.
Please note that this study has been approved by the QUT Human Research Ethics Committee (approval number 1600001019).
Many thanks for your consideration of this request.
Sarah Northfield
Master of Applied Science (Research) student
3646 2182 northfield.sarah@hdr.qut.edu.au
School of Nursing, Faculty of Health, Queensland University of Technology
Appendices 145
Participant information sheet – content validity
PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT
– Content Validity –
Identifying factors that influence referrals to specialist palliative care services for patients with cancer in the in-patient setting
QUT Ethics Approval Number 1600001019
RESEARCH TEAM Principal Researcher: Sarah Northfield Master of Applied Science (Research) student Associate Researchers: Professor Patsy Yates Head of School and Principal Supervisor
A/Prof Raymond Chan Associate Professor and Associate Supervisor Dr John Rosenberg Research Fellow and Associate Supervisor School of Nursing, Faculty of Health Institute of Health and Biomedical Innovation (IHBI) Queensland University of Technology (QUT)
DESCRIPTION This project is being undertaken as part of a Master of Applied Science (Research) degree for Sarah Northfield. The purpose of this project is to identify nurses’ perceptions of the specific actions they take to facilitate the referral of patients with cancer to specialist palliative care services in the in-patient setting and the organisational and personal factors that influence these actions. A draft survey instrument has been developed for this project. Content experts are needed to evaluate whether the survey measures each concept clearly and appropriately. Only Registered Nurses who have completed a Master’s Degree or higher level of education are eligible to participate in content validity. In addition, you will need to achieve one of the following criteria to participate in this study: (i) have worked for a minimum of three years as a cancer nurse in a hospital ward setting; (ii) previous experience developing and testing survey instruments; or (iii) publications in peer-reviewed journals or conference presentations on providing palliative care services in the acute cancer setting. PARTICIPATION Participation in this project will involve completing a survey evaluation form. The survey evaluation form will take approximately 15 minutes to complete. Questions will address issues including how and when you facilitate patient referrals to specialist palliative care services and the factors that influence your referral practices. You will be asked to reflect on your nursing practices and answer questions about topics such as emotional fatigue, burnout, frustration and the work environment. Please ensure you read the remainder of this information sheet and consider all the benefits and risks before deciding whether to participate in this survey. Your participation in this study is completely voluntary. If you agree to participate you do not have to complete any question(s) you are uncomfortable answering. Your decision to participate or not participate will in no way impact on your current or future relationship with QUT. If you do agree to participate, you can withdraw at any time before submitting your survey evaluation form without comment or penalty. Any information already obtained from you will be destroyed. However, as the survey evaluation form is anonymous, once it has been submitted it will not be possible to withdraw.
146 Appendices
EXPECTED BENEFITS It is not expected that this project will directly benefit you. However, it may benefit patients with cancer, Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services. RISKS Potential risks to you are the possible discomfort caused by reviewing some survey items; and the inconvenience of completing a survey evaluation form. When considering the survey content, you will be asked to reflect on your nursing practices and consider questions about topics such as emotional fatigue, burnout, frustration, work environment and professional working relationships which may cause some discomfort. If you experience any discomfort from participating in this research project, QUT provides for limited free psychology, family therapy or counseling services (face-to-face only) for research participants of QUT projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counseling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant. Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. The names of individual persons are not required in the survey evaluation form. All information will be kept secure in locked filing cabinets and on password-protected computer files with access only available to those people directly related to the research. Any data collected as part of this project will be stored securely as per QUT’s Management of Research Data Policy. If you consent to participate, we plan to publish the aggregated results in professional journals. Please note that non-identifiable data collected for this project may be used as comparative data in future projects. CONSENT TO PARTICIPATE Submitting the completed survey evaluation form is accepted as an indication of your consent to participate in this survey. QUESTIONS / FURTHER INFORMATION ABOUT THE PROJECT If you have any questions or require any information, please contact one of the researchers listed below: Sarah Northfield 07 3646 2182 northfield.sarah@hdr.qut.edu.au Patsy Yates 07 3138 3835 p.yates@qut.edu.au Raymond Chan 07 3646 2653 raymond.chan@qut.edu.au John Rosenberg 07 3138 6439 jp.rosenberg@qut.edu.au CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email ethicscontact@qut.edu.au. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE PRINT THIS SHEET FOR YOUR INFORMATION.
Appendices 147
Definitions of key constructs & content validity instructions
DEFINITIONS OF KEY CONSTRUCTS Nursing Advocacy Nursing advocacy is defined as “an integral part of the nurse’s efforts to promote and safeguard the well-being and interests of his/her patients or clients by ensuring that they are aware of their rights and have access to information for informed decisions” (Choi, 2015). Nursing advocacy is a series of behaviours that can be considered across four stages: (1) assessing the need for patient advocacy, (2) identifying the goals of patient advocacy, (3) planning and implementing advocacy actions, and (4) evaluating the outcomes of patient advocacy (Choi, 2015). Advanced cancer For patients with solid tumours, advanced cancer is recognised as metastatic disease (National Cancer Institute, 2015) and/or when locally advanced disease is not amenable to cure (American Cancer Society, 2016). There is no clear definition for advanced disease in the haematology setting (Button et al., 2016). However, progressive or relapsed disease is considered a common characteristic of people with a haematologic malignancy towards the end of life (Button et al., 2016; McGrath & Holewa, 2007). Specialist palliative care services Specialist palliative care services (SPCS) provide direct care to patients who have a life-threatening illness and complex care needs (Johnson et al., 2008; World Health Organization, 2017). The service composition is variable – it may be uni-disciplinary (i.e., nurses only) (Johnson et al., 2011) or a multidisciplinary (including nurses, physicians and sometimes social workers, counsellors, pastoral care or other allied health professionals) team who have completed specialist palliative care training (Finlay, 2001; PCA, 2016). Members of the team provide palliative care services, which include symptom management, patient advocacy and facilitating treatment decision-making and prognostic discussions between the patient, their family and the healthcare team. INSTRUCTIONS FOR COMPLETING THE SURVEY EVALUATION FORM Please read through the survey and complete the Survey Evaluation Form attached. If your area of expertise does not cover a specific question set out on the Survey Evaluation Form, then please just state ‘not applicable’. Please provide a rationale for any suggested additions, deletions or substitutions to the draft survey instrument. This survey is in draft stages only. Please keep in mind that currently this is a paper-based copy of the survey and the survey may look slightly different once survey software has been used to develop the online version of the survey. Your expert opinions in assistance with assessing this survey are highly valued. Please return the completed content validity survey evaluation form via email - northfield.sarah@hdr.qut.edu.au by 18/11/2016. Thank you very much for your time and I look forward to receiving your responses. Warm regards, Sarah Northfield (Master of Applied Science (Research) student, QUT)
148 Appendices
Initial NACC questionnaire
This questionnaire is not a test of your knowledge, but a way for us to find out some of the
facilitators and barriers that influence nurses facilitating patient referrals to specialist palliative care
services in the in-patient setting. Please answer the following questions as honestly as you can.
1. a) Which of the following BEST describes your employment status? (select one only) o I am employed as a Registered Nurse
o I am employed as a nurse practitioner
o Not currently employed
o Retired
If employed as a Registered Nurse or nurse practitioner is selected above, the following question will appear: 1. b) What is your employment status? (select one only)
o Full-time
o Part-time
2. In your current role, do you spend ANY time caring for patients with cancer in a
hospital ward setting? (select one only)
o Yes
o No
Appendices 149
3. What specialist palliative care services are available to patients in your hospital/health service? (select one only)
o There is a dedicated specialist palliative care service as part of our hospital/health service
o There is no dedicated specialist palliative care service as part of our hospital/health services,
but patients can be referred to external specialist palliative care services
o There is no dedicated specialist palliative care service as part of our hospital/health service,
and patients cannot be referred to external specialist palliative care services
o I don’t know what specialist palliative care services are available in my hospital/health
service
4. Which of the following BEST describes the PRIMARY focus of your current role? (select one only) o Clinical
o Education
o Research
o Management
5. How long have you been working as a cancer nurse?
Free text box provided. (e.g., 1year 2months)
6. Which of the following categories BEST describes your current area/s of practice?
(select all that apply)
o Medical Oncology
o Haematology and/or Bone Marrow Transplant
o Radiation Oncology
o Surgical Oncology
o Other (please specify)
150 Appendices
7. What is your HIGHEST LEVEL of education completed in nursing? (select one only) o Hospital certificate
o Bachelor’s degree
o Postgraduate certificate
o Postgraduate diploma
o Master’s degree
o PhD or other doctorate
8. Have you completed palliative care specific education as part of any of the following?
(select all that apply)
o Undergraduate education
o Workshops/seminars/conferences
o Hospital in-service programs (self-directed or face-to-face)
o Clinical placements as an RN
o Self-directed education
o Postgraduate certificate
o Postgraduate diploma
o Master’s degree (coursework or research)
o PhD or other doctorate
o I have not completed any palliative care specific education
9. As a Registered Nurse, have you ever worked for specialist palliative care services?
(select one only)
o Yes
o No
If yes is selected for the question above, the following question will appear:
10. How long did you work in specialist palliative care services?
Free text box provided. (e.g., 1year 2months) 11. Please enter the post code of your workplace:
Free text box provided (*please list the postcode for the workplace where you provide in-patient care). Note: This information is being collected to map the geographical location of your workplace and will
provide information about the accessibility of SPCS nationally. Once mapping is complete, all identifiable
information will be deleted from the database to protect your identity.
Appendices 151
12. Thinking about the past year, how often did you perform the activities listed below
for patients with advanced cancer (i.e., metastatic; relapsed; progressive; or locally
advanced incurable disease)?
Please select one category for each statement below.
Never Rarely Some-times
Often Always
Assess whether patients have a good understanding of their treatment options
0 1 2 3 4
Assess whether patients have a good understanding of their prognosis
0 1 2 3 4
Provide patients with information about their right to make informed decisions about their healthcare
0 1 2 3 4
Ask patients to identify their goals of care 0 1 2 3 4
Identify the need for patient referrals to specialist palliative care services
0 1 2 3 4
Provide patients with information about specialist palliative care services
0 1 2 3 4
Empower patients to make informed decisions about their treatment options
0 1 2 3 4
Discuss with nursing colleagues the need to refer patients to specialist palliative care services
0 1 2 3 4
Discuss with colleagues in the healthcare team the need to refer patients to specialist palliative care services
0 1 2 3 4
Facilitate referral to specialist palliative care services
0 1 2 3 4
Independently refer patients to specialist palliative care services
0 1 2 3 4
152 Appendices
13. Thinking about the past year, please indicate how often you facilitated referrals to
specialist palliative care services for patients in the following circumstances:
Please select one category for each statement below.
Never Rarely Some-times
Often Always
At diagnosis of cancer, regardless of prognosis
0 1 2 3 4
At diagnosis of advanced cancer (i.e., metastatic; relapsed; progressive; or locally advanced incurable disease)
0 1 2 3 4
During treatment (i.e., chemotherapy or radiation therapy) that aims to provide disease control for advanced cancer
0 1 2 3 4
When no further curative treatment can be offered for advanced cancer
0 1 2 3 4
When supportive treatments (e.g., blood transfusions, antibiotics) have been stopped
0 1 2 3 4
When end-of-life care is imminent 0 1 2 3 4
Appendices 153
Please select one category for each statement below.
Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
14. I know how to facilitate a patient referral to specialist palliative care services. 1 2 3 4 5 6 7
15. The objectives of patient referrals to specialist palliative care services and my role in this are clearly defined for me.
1 2 3 4 5 6 7
16. With regard to facilitating a patient referral to specialist palliative care services, I know what my responsibilities are.
1 2 3 4 5 6 7
17. In my work as a cancer nurse, I know exactly what is expected from me when I facilitate patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
18. I have been trained in facilitating patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
154 Appendices
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
19. I have the skills to facilitate patient referrals to specialist palliative care services. 1 2 3 4 5 6 7
20. I have the skills to directly refer a patient to specialist palliative care services. 1 2 3 4 5 6 7
21. I am practiced at facilitating patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
22. Facilitating patient referrals to specialist palliative care services is part of my work as a nurse.
1
2
3
4
5
6
7
23. As a nurse, it is my job to facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
24. It is my responsibility as a nurse to facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
25. I am confident that I can facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
Appendices 155
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
26. I am confident I can provide patients with information about specialist palliative care services.
1
2
3
4
5
6
7
27. I am confident that I can facilitate patient referrals to specialist palliative care services, even when other healthcare professionals do not do this.
1
2
3
4
5
6
7
28. I am confident that I can facilitate patient referrals to specialist palliative care services, even when there is limited time.
1
2
3
4
5
6
7
29. I am confident that I can facilitate patient referrals to specialist palliative care services when patients are unable to speak up about their wishes.
1
2
3
4
5
6
7
30. I have control over facilitating patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
156 Appendices
For each statement below, please select the number below that best represents how you feel:
Very difficult
Difficult Somewhat Difficult
Neither difficult or easy
Somewhat easy
Easy Very Easy
31. For me, assessing whether patients have a good understanding of their treatment options is…
1
2
3
4
5
6
7
32. For me, identifying the need for patient referrals to specialist palliative care services is…
1
2
3
4
5
6
7
33. For me, asking patients to identify their goals of care is…
1
2
3
4
5
6
7
34. For me, discussing the need to refer patients to specialist palliative care services with the treating doctor is…
1
2
3
4
5
6
7
Appendices 157
Please select one category for each statement below. Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
35. When facilitating referrals to specialist palliative care services, in uncertain times, I usually expect the best possible outcomes for my patients.
1
2
3
4
5
6
7
36. When facilitating patient referrals to specialist palliative care services, I’m always optimistic about the future.
1
2
3
4
5
6
7
37. When facilitating patient referrals to specialist palliative care services, overall, I expect more good things to happen than bad.
1
2
3
4
5
6
7
158 Appendices
For each statement below, select the mark on the line between the two descriptions which you think best describes your experiences relative to the two extremes. These two statements refer to the degree to which you find facilitating patient referrals to specialist palliative care services to be a useful or worthwhile experience. For me, facilitating patient referrals to specialist palliative care services is… 38. Not useful Very useful 39. Not worthwhile at all Very worthwhile
Please select one category for each statement below. Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
40. If I facilitate referrals to specialist palliative care services, based on patient needs, my actions will be effective.
1
2
3
4
5
6
7
41. If I facilitate patient referrals to specialist palliative care services, patients will appreciate this.
1
2
3
4
5
6
7
Appendices 159
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
42. If I facilitate patient referrals to specialist palliative care services, this will strengthen collaborations within the healthcare team.
1
2
3
4
5
6
7
43. If I facilitate patient referrals to specialist palliative care services, I will feel like I am making a difference.
1
2
3
4
5
6
7
44. If I facilitate patient referrals to specialist palliative care services, it will reduce patient distress.
1
2
3
4
5
6
7
45. When I facilitate patient referrals to specialist palliative care services, I get recognition from colleagues who are important to me.
1
2
3
4
5
6
7
46. When I facilitate patient referrals to specialist palliative care services, I get recognition from my patients.
1
2
3
4
5
6
7
47. I intend to facilitate patient referrals to specialist palliative care services, even if I know the treating doctor does not have a good relationship with specialist palliative care services.
1
2
3
4
5
6
7
48. I intend to facilitate patient referrals to specialist palliative care services, even if patients wish to continue active cancer treatment.
1
2
3
4
5
6
7
160 Appendices
Please select one category for each statement below. Please indicate your level of agreement with the following statements: Never Seldom Sometimes Regularly Often Almost
AlwaysAlways
49. Generally, how often are other nursing tasks a higher priority than facilitating patient referrals to specialist palliative care services?
1
2
3
4
5
6
7
50. Generally, how often are other nursing tasks more urgent than facilitating patient referrals to specialist palliative care services?
1
2
3
4
5
6
7
Appendices 161
Please select one category for each statement below. Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
51. The evidence about the benefits of providing specialist palliative care services to patients with advanced cancer is very strong.
1
2
3
4
5
6
7
52. Facilitating patient referrals to specialist palliative care services adds value to patient care.
1
2
3
4
5
6
7
53. Facilitating patient referrals to specialist palliative care services costs little time to provide.
1
2
3
4
5
6
7
54. Facilitating patient referrals to specialist palliative care services is part of my daily practice.
1
2
3
4
5
6
7
55. Facilitating patient referrals to specialist palliative care services is simple.
1
2
3
4
5
6
7
56. Health service authorities provide clear guidelines and training about how to facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
57. There are sufficient nursing staff to allow nurses to facilitate patient referrals to specialist palliative care services
1
2
3
4
5
6
7
58. The in-patient setting supports interventions such as patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
162 Appendices
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
59. In the organisation I work, all the necessary resources are available to provide specialist palliative care services where needed.
1
2
3
4
5
6
7
60. I can count on support from the management of the organisation I work in when things get tough trying to facilitate referrals to specialist palliative care services.
1
2
3
4
5
6
7
61. In the organisation I work in, supportive working relationships exist between cancer care services and specialist palliative care services.
1
2
3
4
5
6
7
62. In the organisation I work in, supportive working relationships exist between cancer nurses and specialist palliative care services.
1
2
3
4
5
6
7
63. In the organisation I work in, there is sufficient patient access to specialist palliative care services.
1
2
3
4
5
6
7
64. In my workplace, specialist palliative care services accept patients receiving curative cancer treatment.
1
2
3
4
5
6
7
65. In my workplace, patients with complex care needs are routinely referred to specialist palliative care services.
1
2
3
4
5
6
7
Appendices 163
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
66. My workplace provides healthcare professionals with the training to facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
67. My workplace performs routine needs assessments for patients with advanced cancer.
1
2
3
4
5
6
7
68. My workplace provides decision-making tools to assist healthcare professionals decide when to refer patients to specialist palliative care services.
1
2
3
4
5
6
7
69. My workplace routinely provides information about specialist palliative care services to patients with advanced cancer.
1
2
3
4
5
6
7
70. Most people who are important to me think that I should facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
71. Healthcare professionals with whom I provide patient care think I should facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
72. Nursing colleagues with whom I provide patient care facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
164 Appendices
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
73. Other healthcare professionals with whom I provide patient care facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
74. I can count on support from healthcare professionals with whom I provide patient care when things get tough facilitating patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
75. Healthcare professionals with whom I provide patient care are willing to listen to my problems with facilitating patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
76. Healthcare professionals with whom I provide patient care are helpful with facilitating patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
Appendices 165
Please select one category for each statement below. For each statement below, please indicate how often you feel this way:
Never Seldom Some-times
Regularly Often Almost Always
Always
77. When I work with other members of the healthcare team to facilitate patient referrals to specialist palliative care services, I feel optimistic that we will achieve this outcome.
1 2 3 4 5 6 7
78. When I facilitate patient referrals to specialist palliative care services, I feel useful to patients.
1 2 3 4 5 6 7
79. I feel calm when I think about facilitating patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
80. I feel distressed when I think about facilitating patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
81. I feel concerned referrals to specialist palliative care services will jeopardise my relationship with patients.
1 2 3 4 5 6 7
82. I feel frustrated when trying to facilitate patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
83. Emotional fatigue prevents me from facilitating more patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
84. Burnout prevents me from facilitating more patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
166 Appendices
Please select one category for each statement below. Please indicate your level of agreement with the following statements:
Strongly disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
85. I have a clear plan of how I will facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
86. I have a clear plan under what circumstances I will facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
87. I have a clear plan when I will facilitate patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
88. I have a clear plan with regard to facilitating patient referrals to specialist palliative care services, when patients are not familiar with the service.
1
2
3
4
5
6
7
89. I have a clear plan with regard to facilitating patient referrals to specialist palliative care services when there is little time.
1
2
3
4
5
6
7
90. I have a clear plan with regard to facilitating patient referrals to specialist palliative care services, when other healthcare professionals with whom I provide patient care do not do this.
1
2
3
4
5
6
7
Appendices 167
Strongly
disagree Disagree Somewhat
disagree Neither agree or disagree
Somewhat agree
Agree Strongly agree
91. Facilitating patient referrals to specialist palliative care services is something I do automatically
1
2
3
4
5
6
7
92. Facilitating patient referrals to specialist palliative care services is something I do without having to consciously remember.
1
2
3
4
5
6
7
93. Facilitating patient referrals to specialist palliative care services is something I do without thinking.
1
2
3
4
5
6
7
94. Facilitating patient referrals to specialist palliative care services is something I start doing before I realise I am doing it.
1
2
3
4
5
6
7
168 Appendices
Please select one category for each statement below. 95. To what extent do you agree that the following statements are reasons to facilitate patient referrals to specialist palliative care services?
Strongly disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
The patient has a diagnosis of advanced cancer 1 2 3 4 5 6 7
The patient has uncontrolled physical symptoms 1 2 3 4 5 6 7
You can foresee the future need for symptom control 1 2 3 4 5 6 7
The patient has complex psychosocial needs 1 2 3 4 5 6 7
There are complex family needs 1 2 3 4 5 6 7
The family is not coping emotionally 1 2 3 4 5 6 7
The patient is not coping emotionally 1 2 3 4 5 6 7
The patient / family needs spiritual support 1
2
3
4
5
6
7
The patient is receiving treatment with palliative intent 1
2
3
4
5
6
7
Thank you for taking the time to complete this questionnaire.
Appendices 169
Survey evaluation form – content validity
Survey Evaluation Form PLEASE READ THESE INSTRUCTIONS FIRST The survey aims to measure the actions cancer nurses take in the in-patient setting to facilitate patient referrals to specialist palliative care services and the organisational and personal factors that influence these actions. When reading through the survey, do you find the questions and response options:
• Clear? • Appropriate? • Relevant?
Please indicate whether you think that any of the questions or response options should be deleted or revised in the final instrument. *PLEASE REVIEW SURVEY AND PARTICIPANT INFORMATION SHEET*
1. Referring to the Participant Information Sheet: Was the aim of the survey stated
clearly?
Yes No 2. If not, how do you suggest that it be improved?
3. Referring to the entire survey: Was there enough information provided in the
instructions?
Yes No
170 Appendices
4. If not, how do you suggest that this be improved?
5. Do you think that I need to provide any additional information or background
about the specific nursing activities listed in the survey?
Yes No 6. If yes, how do you suggest that this be improved?
7. In general, can you suggest any other questions that should be asked that were
not on the survey?
Appendices 171
8. Now relating to specific questions on the survey. Consider the survey question below - is the wording of ANY of these categories unclear?
Thinking about the past year, please indicate how often you facilitated referrals to specialist palliative care services for patients in the following circumstances: Please select one category for each statement below.
Never Rarely Sometimes Often Always
At diagnosis of cancer, regardless of prognosis
At diagnosis of advanced cancer (i.e., metastatic; relapsed; progressive; or locally advanced incurable disease)
During treatment (i.e., chemotherapy or radiation therapy) that aims to provide disease control for advanced cancer
When no further curative treatment can be offered for advanced cancer
When supportive treatments (e.g., blood transfusions, antibiotics) have been stopped
When end-of-life care is imminent
Yes- Please give details in space below: No
172 Appendices
9. Consider the survey question below - is the wording of ANY of these categories unclear?
Please select one category for each statement below. To what extent do you agree that the following statements are reasons to facilitate patient referrals to specialist palliative care services?
Strongly disagree Disagree
Somewhat disagree
Neither agree or disagree
Somewhat agree Agree
Strongly agree
The patient has a diagnosis of advanced cancer
1 2 3 4 5 6 7
The patient has uncontrolled physical symptoms
1 2 3 4 5 6 7
You can foresee the future need for symptom control
1 2 3 4 5 6 7
The patient has complex psychosocial needs
1 2 3 4 5 6 7
There are complex family needs 1 2 3 4 5 6 7
The family is not coping emotionally 1 2 3 4 5 6 7
The patient is not coping emotionally 1 2 3 4 5 6 7
The patient / family needs spiritual support
1 2 3 4 5 6 7
The patient is receiving treatment with palliative intent
1 2 3 4 5 6 7
Yes - Please give details in space below: No
10. Are any of the other survey questions or response options unclear?
Yes- Please give details in space below: No
Appendices 173
11. Are any of the other survey questions or response options irrelevant for
measuring the factors that influence when and how often nurses facilitate referrals to specialist palliative care services?
Yes- Please give details in space below: No 12. Do you have any other comments to add?
Thank you for taking the time to complete this survey evaluation form! The research team really appreciates your participation.
174 Appendices
Email invitation, email reminder – face validity & pilot testing
Email invitation – face validity & pilot testing
Subject: Invitation to participate in research study about cancer nurses advocating for patient referrals to specialist palliative care services
Dear [insert name],
Sarah Northfield, Associate Professor Raymond Chan, Dr John Rosenberg and Professor Patsy Yates have been working together to develop a survey that identifies the factors that influence cancer nurses advocating for patient referrals to specialist palliative care services in the in-patient setting.
As an experienced cancer nurse, we need your feedback on the draft survey instrument.
As you may know from your own clinical expertise in this area, early referral to specialist palliative care services (SPCS) can improve quality of life and in some cases, even prolong survival for patients with advanced cancer. Nevertheless, many studies have found that healthcare professionals generally make referrals to SPCS for end-of-life care, rather than referring patients earlier in the disease process. To date, limited evidence exists about how cancer nurses contribute to the referral decision-making process to SPCS. The data collected from this survey aims to address this gap in the literature.
This research may benefit patients with cancer and their families. It may also benefit Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services.
We are inviting you to complete an online survey and the attached survey evaluation form. As you complete the online survey, please have the survey evaluation form readily accessible. Complete each section of the form as you progress through the survey. We want to ensure the survey items make sense and flow logically. Your assistance in evaluating these items will contribute immensely to the success of this project.
Appendices 175
Please find attached the following resources and materials:
(1) Participant Information Sheet
(2) Set of instructions for pilot testing and completing the survey;
(3) Survey evaluation form
You can access the Participant Information Sheet and anonymous survey by clicking on the link below: [URL]
Participation in the online survey and survey evaluation form is completely voluntary and there are no implications for non-respondents. Your feedback will assist me in measuring whether the data items are clear and flow logically.
We would appreciate you completing the online survey by clicking on the link above (responses will be saved when you click the submit button). Please return the completed survey evaluation form via email - northfield.sarah@hdr.qut.edu.au. Can you please return the completed online survey and survey evaluation form by 2nd December. Please feel free to contact me if you have any questions about the enclosed materials.
Please note that this study has been approved by the QUT Human Research Ethics Committee (approval number 1600001019). Many thanks for your consideration of this request.
Sarah Northfield
Master of Applied Science (Research) student
3646 2182 northfield.sarah@hdr.qut.edu.au
School of Nursing, Faculty of Health, Queensland University of Technology
176 Appendices
Email reminder – face validity & pilot testing
Subject: CLOSING SOON - Invitation to participate in a research study about cancer nurses advocating for patient referrals to specialist palliative care services
Dear [insert name],
This email is sent as a reminder. If you have already completed the survey evaluation form, I would like to thank you for your participation. If you have not yet completed an evaluation form for this survey, please review the information below.
Sarah Northfield, Associate Professor Raymond Chan, Dr John Rosenberg and Professor Patsy Yates have been working together to develop a survey that identifies the factors that influence cancer nurses advocating for patient referrals to specialist palliative care services in the in-patient setting.
As an experienced cancer nurse, we need your feedback on the draft survey instrument. If you would like to participate, please provide your feedback on this survey by 2nd December.
As you may know from your own clinical expertise in this area, early referral to specialist palliative care services (SPCS) can improve quality of life and in some cases, even prolong survival for patients with advanced cancer. Nevertheless, many studies have found that healthcare professionals generally make referrals to SPCS for end-of-life care, rather than referring patients earlier in the disease process. To date, limited evidence exists about how cancer nurses contribute to the referral decision-making process to SPCS. The data collected from this survey aims to address this gap in the literature.
This research may benefit patients with cancer and their families. It may also benefit Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services.
We are inviting you to complete an online survey and the attached survey evaluation form. As you complete the online survey, please have the survey evaluation form readily accessible. Complete each section of the form as you progress through the survey. We want to ensure the survey items make sense and flow logically. Your assistance in evaluating these items will contribute immensely to the success of this project.
Appendices 177
Please find attached the following resources and materials:
(1) Participant Information Sheet
(2) Set of instructions for pilot testing and completing the survey;
(3) Survey evaluation form
You can access the Participant Information Sheet and anonymous survey by clicking on the link below: [URL]
Participation in the online survey and survey evaluation form is completely voluntary and there are no implications for non-respondents. Your feedback will assist me in measuring whether the data items are clear and flow logically.
We would appreciate you completing the online survey by clicking on the link above (responses will be saved when you click the submit button). Please return the completed survey evaluation form via email - northfield.sarah@hdr.qut.edu.au. Can you please return the completed online survey and survey evaluation form by 2nd December. Please feel free to contact me if you have any questions about the enclosed materials.
Please note that this study has been approved by the QUT Human Research Ethics Committee (approval number 1600001019). Many thanks for your consideration of this request.
Sarah Northfield
Master of Applied Science (Research) student
3646 2182 northfield.sarah@hdr.qut.edu.au
School of Nursing, Faculty of Health, Queensland University of Technology
Appendices 179
Pilot test instructions
INSTRUCTIONS FOR PILOT TESTING Please read the Participant Information Sheet attached to this email before deciding whether you wish to participate in this study. If you wish to participate in this study, please click on the link in the email invitation to access the online survey. Please complete the survey as if you were a participant and provide feedback on your experience. When participating in pilot testing of this survey, please provide feedback on the following:
• How long did it take to complete the survey? • Were the survey instructions clear? • Could you understand all the survey questions?
PLEASE SUBMIT YOUR RESPONSES TO THE ONLINE SURVEY BY
CLICKING THE SUBMIT BUTTON BY 2ND DECEMBER. INSTRUCTIONS FOR COMPLETING THE SURVEY EVALUATION FORM As you complete the online survey, please have the survey evaluation form readily accessible. Complete each section of the survey evaluation form as you progress through the online survey. As you read each question in the online survey, please consider the following question - At a glance – does this survey item make sense? In addition, please indicate whether you think the wording of any the questions or response options should be revised in the final survey instrument. Please provide a rationale for any suggested changes to the draft survey instrument. This survey is in draft stages only. Your expertise and time taken to assess this survey is highly valued. Please return the completed survey evaluation form via email - northfield.sarah@hdr.qut.edu.au by 2nd December. Thank you very much for your time and I look forward to receiving your feedback. Warm regards Sarah Northfield (Master of Applied Science (Research) student, QUT).
Appendices 181
Participant information sheet – face validity & pilot testing
PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT
– Face Validity & Pilot Testing –
Identifying factors that influence referrals to specialist palliative care services for patients with cancer in the in-patient setting
QUT Ethics Approval Number 1600001019
RESEARCH TEAM Principal Researcher: Sarah Northfield Master of Applied Science (Research) student Associate Researchers: Professor Patsy Yates Head of School and Principal Supervisor
A/Prof Raymond Chan Associate Professor and Associate Supervisor Dr John Rosenberg Research Fellow and Associate Supervisor School of Nursing, Faculty of Health Institute of Health and Biomedical Innovation (IHBI) Queensland University of Technology (QUT)
DESCRIPTION This project is being undertaken as part of a Master of Applied Science (Research) degree for Sarah Northfield. The purpose of this project is to identify nurses’ perceptions of the specific actions they take to advocate for the referral of patients with cancer to specialist palliative care services in the in-patient setting and the organisational and personal factors that influence these actions. A draft survey instrument has been developed for this project. Cancer nurses are needed to evaluate whether the survey instructions, items and response options make sense and flow logically. Only QUT postgraduate nursing students who spend some time providing care for patients with cancer in the in-patient setting are eligible to participate in this study. PARTICIPATION Participation in this project will involve pilot testing the online survey (completing the survey as if you were a survey participant) and completing a survey evaluation form. The online survey and survey evaluation form will take approximately 25 minutes to complete. As you complete the online survey, please consider the following question – at a glance – does this survey item make sense? The draft survey items will address issues including how and when you advocate for patient referrals to specialist palliative care services and the factors that influence your referral practices. You will be asked to reflect on your nursing practices and answer questions about topics such as emotional fatigue, burnout, frustration and the work environment. Please ensure you read the remainder of this information sheet and consider all the benefits and risks before deciding whether to participate in this survey. Your participation in this study is completely voluntary. If you agree to participate you do not have to complete any question(s) you are uncomfortable answering. Your decision to participate or not participate will in no way impact on your current or future relationship with the Master of Applied Science (Research) candidate, research team members or QUT. If you do agree to participate, you can withdraw at any time before submitting your online survey or survey evaluation form without comment or penalty. However, as the online survey and survey evaluation form are anonymous, once they have been submitted it will not be possible to withdraw.
182 Appendices
EXPECTED BENEFITS It is not expected that this project will directly benefit you. However, it may benefit patients with cancer, Registered Nurses and nurse practitioners working in the cancer specialty in the future, as information gained could be used to implement strategies to support the nursing role in the referral decision-making process for specialist palliative care services. RISKS Potential risks to participants are the possible discomfort caused by reviewing some survey items; and the inconvenience of completing a survey. When considering the survey content, you will be asked to reflect on your nursing practices and consider questions about topics such as emotional fatigue, burnout, frustration, work environment and professional working relationships which may cause some discomfort. If you experience any discomfort from participating in this research project, QUT provides for limited free psychology, family therapy or counseling services (face-to-face only) for research participants of QUT projects who may experience discomfort or distress as a result of their participation in the research. Should you wish to access this service please call the Clinic Receptionist on 07 3138 0999 (Monday–Friday only 9am–5pm), QUT Psychology and Counseling Clinic, 44 Musk Avenue, Kelvin Grove, and indicate that you are a research participant. Alternatively, Lifeline provides access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. PRIVACY AND CONFIDENTIALITY All comments and responses will be treated confidentially unless required by law. The names of individual persons are not required in the online survey or survey evaluation form. All information will be kept secure in locked filing cabinets and on password-protected computer files with access only available to those people directly related to the research. Any data collected as part of this project will be stored securely as per QUT’s Management of Research Data Policy. If you consent to participate, we plan to publish the aggregated results in professional journals. Please note that non-identifiable data collected for this project may be used as comparative data in future projects. CONSENT TO PARTICIPATE Submitting the completed online survey and / or survey evaluation form is accepted as an indication of your consent to participate in this survey. QUESTIONS / FURTHER INFORMATION ABOUT THE PROJECT If you have any questions or require any information, please contact one of the researchers listed below: Sarah Northfield 07 3646 2182 northfield.sarah@hdr.qut.edu.au Patsy Yates 07 3138 3835 p.yates@qut.edu.au Raymond Chan 07 3646 2653 raymond.chan@qut.edu.au John Rosenberg 07 3138 6439 jp.rosenberg@qut.edu.au CONCERNS / COMPLAINTS REGARDING THE CONDUCT OF THE PROJECT QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email ethicscontact@qut.edu.au. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner.
THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.
Appendices 183
Survey evaluation form – face validity
Survey Evaluation Form PLEASE READ THESE INSTRUCTIONS FIRST The survey aims to measure the actions cancer nurses take in the in-patient setting to advocate for patient referrals to specialist palliative care services and the organisational and personal factors that influence these actions. When completing the online survey, please consider the following question - at a glance – do these survey items make sense? Please indicate whether you think the wording of the instructions, items or response options should be revised in the final instrument. *PLEASE REVIEW THE SURVEY & FACE VALIDITY PARTICIPANT INFORMATION SHEETS*
1. Do you spend any time providing care to patients with cancer in the in-patient setting? Yes No ** **If you selected “no” to the above question, please do not complete the remainder of this form. Unfortunately you do not meet the eligibility criteria to participate in this project. Thank you for your time and consideration of this research project.
2. Referring to the Survey Participant Information Sheet: Was the aim of the survey stated clearly? Yes No
3. If not, how do you suggest that it be improved?
184 Appendices
4. Referring to the entire survey: Was there enough information provided in the instructions? Yes No
5. If not, how do you suggest that this be improved?
6. How long did it take to complete the online survey?
(minutes)
7. Do you think that I need to provide any additional information or background about the specific nursing activities listed in the survey? Yes No
8. If yes, how do you suggest that this be improved?
Appendices 185
9. Now relating to specific questions on the survey. Consider the survey question below - is the wording of ANY of these categories unclear?
Thinking about the past year, please indicate how often you advocated for patient referrals to specialist palliative care services in the following circumstances: Please select one category for each statement below.
Never Rarely Sometimes Often Always At diagnosis of cancer, regardless of prognosis.
At diagnosis of advanced cancer (i.e., metastatic; relapsed; progressive; or locally advanced incurable disease).
During treatment (i.e., surgery, chemotherapy, radiation or monoclonal antibody therapy) that aims to provide disease control for advanced cancer.
When no further curative treatment can be offered for advanced cancer.
When supportive treatments (e.g., blood transfusions, antibiotics) have been stopped.
When end of life is imminent. Yes- Please give details in space below: No
186 Appendices
10. Consider the survey question below - is the wording of ANY of these categories unclear?
To what extent do you agree that the following statements are reasons to advocate for patient referrals to specialist palliative care services? Please select one category for each statement below.
Strongly disagree Disagree
Somewhat disagree
Neither agree or disagree
Somewhat agree Agree
Strongly agree
The patient has a diagnosis of advanced cancer.
1 2 3 4 5 6 7
The patient has uncontrolled physical symptoms.
1 2 3 4 5 6 7
You can foresee the future need for symptom control.
1 2 3 4 5 6 7
The patient has complex psychosocial needs. 1 2 3 4 5 6 7
The family has complex psychosocial needs. 1 2 3 4 5 6 7
The family is not coping emotionally. 1 2 3 4 5 6 7
The patient is not coping emotionally. 1 2 3 4 5 6 7
The patient needs spiritual support. 1 2 3 4 5 6 7
The family needs spiritual support. 1 2 3 4 5 6 7
The patient is receiving treatment with palliative intent.
1 2 3 4 5 6 7
Yes - Please give details in space below: No
Appendices 187
11. Are any of the other survey questions or response options difficult to understand? Yes- Please give details in space below: No
12. Are any of the other survey questions or response options irrelevant for
measuring the factors that influence when and how often nurses facilitate referrals to specialist palliative care services? Yes- Please give details in space below: No
13. Do you have any other comments to add?
Thank you for taking the time to complete this survey evaluation form!
The research team really appreciates your participation.
Appendices 189
Final NACC questionnaire
This questionnaire is not a test of your knowledge, but a way for us to find out some of the
facilitators and barriers that influence nurses advocating for patient referrals to specialist
palliative care services in the in-patient setting. Please answer the following questions as
honestly as you can.
1. a) Which of the following BEST describes your employment status? (select one only) o I am employed as a Registered Nurse
o I am employed as a nurse practitioner
o Not currently employed
o Retired
If employed as a Registered Nurse or nurse practitioner is selected above, the following question will appear: 1. b) What is your employment status? (select one only)
o Full-time
o Part-time
2. In your current role, do you spend ANY time caring for patients with cancer
in a hospital ward setting? (select one only)
o Yes
o No
190 Appendices
3. What specialist palliative care services are available to patients in your hospital/health service? (select one only)
o There is a dedicated specialist palliative care service as part of our hospital/health service
o There is no dedicated specialist palliative care service as part of our hospital/health services,
but patients can be referred to external specialist palliative care services
o There is no dedicated specialist palliative care service as part of our hospital/health service,
and patients cannot be referred to external specialist palliative care services
o I don’t know what specialist palliative care services are available in my hospital/health
service
4. Which of the following BEST describes the PRIMARY focus of your current role? (select one only) o Clinical
o Education
o Research
o Management
5. How long have you been working as a cancer nurse?
Free text box provided. (e.g., 1year 2months)
6. In your workplace, is it within your scope of practice to directly refer to specialist
palliative care services?
o Yes
o No
7. Which of the following categories BEST describes your current area/s of practice?
(select all that apply)
o Medical Oncology
o Haematology and/or Bone Marrow Transplant
o Radiation Oncology
o Surgical Oncology
o Other (please specify)
Appendices 191
8. What is your HIGHEST LEVEL of education completed in nursing? (select one only) o Hospital certificate
o Bachelor’s degree
o Postgraduate certificate
o Postgraduate diploma
o Master’s degree
o PhD or other doctorate
9. Have you completed palliative care specific education as part of any of the
following? (select all that apply)
o Undergraduate education
o Workshops/seminars/conferences
o Hospital in-service programs (self-directed or face-to-face)
o Clinical placements as an RN
o Self-directed education
o Postgraduate certificate
o Postgraduate diploma
o Master’s degree (coursework or research)
o PhD or other doctorate
o I have not completed any palliative care specific education
10. a) As a Registered Nurse, have you ever worked for specialist palliative care
services? (select one only)
o Yes
o No
If yes is selected for the question above, the following question will appear:
10. b) How long did you work in specialist palliative care services?
Free text box provided. (e.g., 1year 2months) 11. Please enter the post code of your workplace:
Free text box provided (*please list the postcode for the workplace where you provide in-patient care). Note: This information is being collected to map the geographical location of your workplace and will
provide information about the accessibility of SPCS nationally. Once mapping is complete, all identifiable
information will be deleted from the database to protect your identity.
192 Appendices
12. Thinking about the past year, how often did you perform the activities listed
below for patients with advanced cancer (i.e., metastatic; relapsed; progressive;
or locally advanced incurable disease)?
Please select one category for each statement below.
Never Rarely Some-times
Often Always
Assess whether patients have a good understanding of their treatment options
0 1 2 3 4
Assess whether patients have a good understanding of their prognosis
0 1 2 3 4
Provide patients with information about their right to make informed decisions about their healthcare
0 1 2 3 4
Ask patients to identify their goals of care 0 1 2 3 4
Identify the need for patient referrals to specialist palliative care services
0 1 2 3 4
Provide patients with information about specialist palliative care services
0 1 2 3 4
Empower patients to make informed decisions about their treatment options
0 1 2 3 4
Discuss with nursing colleagues the need to refer patients to specialist palliative care services
0 1 2 3 4
Discuss with colleagues in the healthcare team the need to refer patients to specialist palliative care services
0 1 2 3 4
Advocate for patient referrals to specialist palliative care services
0 1 2 3 4
Independently refer patients to specialist palliative care services
0 1 2 3 4
Appendices 193
13. Thinking about the past year, please indicate how often you advocated
referrals to specialist palliative care services for patients in the following
circumstances:
Please select one category for each statement below.
Never Rarely Some-times
Often Always
At diagnosis of cancer, regardless of prognosis
0 1 2 3 4
At diagnosis of advanced cancer (i.e., metastatic; relapsed; progressive; or locally advanced incurable disease)
0 1 2 3 4
During treatment (i.e., chemotherapy or radiation therapy) that aims to provide disease control for advanced cancer
0 1 2 3 4
When no further curative treatment can be offered for advanced cancer
0 1 2 3 4
When supportive treatments (e.g., blood transfusions, antibiotics) have been stopped
0 1 2 3 4
When end of life is imminent 0 1 2 3 4
194 Appendices
Please select one category for each statement below. 14. To what extent do you agree that the following statements are reasons to advocate patient referrals to specialist palliative care services?
Strongly disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
The patient has a diagnosis of advanced cancer 1 2 3 4 5 6 7
The patient has uncontrolled physical symptoms 1 2 3 4 5 6 7
You can foresee the future need for symptom control 1 2 3 4 5 6 7
The patient has complex psychosocial needs 1 2 3 4 5 6 7
There are complex family needs 1 2 3 4 5 6 7
The family is not coping emotionally 1 2 3 4 5 6 7
The patient is not coping emotionally 1 2 3 4 5 6 7
The patient needs spiritual support 1
2
3
4
5
6
7
The family needs spiritual support 1
2
3
4
5
6
7
The patient is receiving treatment with palliative intent 1
2
3
4
5
6
7
Appendices 195
Please select one category for each statement below.
Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
15. As a nurse, it is my job to advocate for patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
16. Advocating for patient referrals to specialist palliative care services is part of my work as a nurse.
1
2
3
4
5
6
7
17. I know how to advocate a patient referral to specialist palliative care services. 1 2 3 4 5 6 7
18. The objectives of patient referrals to specialist palliative care services and my role in this are clearly defined for me.
1 2 3 4 5 6 7
19. With regard to advocating a patient referral to specialist palliative care services, I know what my responsibilities are.
1 2 3 4 5 6 7
20. In my work as a cancer nurse, I know exactly what is expected from me when I advocate for patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
21. I have received training in how to advocate for patient referrals to specialist palliative care services. 1 2 3 4 5 6 7
196 Appendices
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
22. I have the skills to advocate for patient referrals to specialist palliative care services. 1 2 3 4 5 6 7
23. I have the skills to directly refer a patient to specialist palliative care services. 1 2 3 4 5 6 7
24. I am practiced at advocating for patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
25. I am confident that I can advocate for patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
Appendices 197
Strongly disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
26. I am confident I can provide patients with information about specialist palliative care services.
1
2
3
4
5
6
7
27. I am confident that I can advocate for patient referrals to specialist palliative care services, even when other healthcare professionals do not do this.
1
2
3
4
5
6
7
28. I am confident that I can advocate for patient referrals to specialist palliative care services, even when there is limited time.
1
2
3
4
5
6
7
29. I am confident that I can advocate for patient referrals to specialist palliative care services when patients are unable to speak up about their wishes.
1
2
3
4
5
6
7
30. I have control over advocating patient referrals to specialist palliative care services.
1
2
3
4
5
6
7
198 Appendices
For each statement below, please select the number below that best represents how you feel:
Very difficult
Difficult Somewhat Difficult
Neither difficult or easy
Somewhat easy
Easy Very Easy
31. For me, assessing whether patients have a good understanding of their treatment options is…
1
2
3
4
5
6
7
32. For me, identifying the need for patient referrals to specialist palliative care services is…
1
2
3
4
5
6
7
33. For me, asking patients to identify their goals of care is…
1
2
3
4
5
6
7
34. For me, discussing the need to refer patients to specialist palliative care services with the treating doctor is…
1
2
3
4
5
6
7
Appendices 199
Please select one category for each statement below. Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
35. When advocating for referrals to specialist palliative care services, in uncertain times, I usually expect the best possible outcomes for my patients.
1
2
3
4
5
6
7
36. When advocating for patient referrals to specialist palliative care services, I’m always optimistic about the future.
1
2
3
4
5
6
7
37. When advocating for patient referrals to specialist palliative care services, overall, I expect more good things to happen than bad.
1
2
3
4
5
6
7
200 Appendices
For each statement below, select the mark on the line between the two descriptions which you think best describes your experiences relative to the two extremes. These two statements refer to the degree to which you find advocating for patient referrals to specialist palliative care services to be a useful or worthwhile experience. For me, advocating for patient referrals to specialist palliative care services is… 38. Not useful Very useful 39. Not worthwhile at all Very worthwhile
Please select one category for each statement below. Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
40. If I advocate for referrals to specialist palliative care services, based on patient needs, my actions will be effective.
1
2
3
4
5
6
7
41. If I advocate for patient referrals to specialist palliative care services, patients will appreciate this.
1
2
3
4
5
6
7
42. If I advocate for patient referrals to specialist palliative care services, this will strengthen collaborations within the healthcare team.
1
2
3
4
5
6
7
Appendices 201
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
43. If I advocate for patient referrals to specialist palliative care services, I will feel like I am making a difference.
1
2
3
4
5
6
7
44. If I advocate for patient referrals to specialist palliative care services, it will reduce patient distress.
1
2
3
4
5
6
7
45. When I advocate for patient referrals to specialist palliative care services, I get recognition from colleagues who are important to me.
1
2
3
4
5
6
7
46. When I advocate for patient referrals to specialist palliative care services, I get recognition from my patients.
1
2
3
4
5
6
7
47. I intend to advocate for patient referrals to specialist palliative care services, even if I know the treating doctor does not have a good relationship with specialist palliative care services.
1
2
3
4
5
6
7
48. I intend to advocate for patient referrals to specialist palliative care services, even if patients wish to continue active cancer treatment.
1
2
3
4
5
6
7
202 Appendices
Please select one category for each statement below. Please indicate your level of agreement with the following statements: Never Seldom Sometimes Regularly Often Almost
AlwaysAlways
49. Generally, how often are other nursing tasks a higher priority than facilitating patient referrals to specialist palliative care services?
1
2
3
4
5
6
7
50. Generally, how often are other nursing tasks more urgent than facilitating patient referrals to specialist palliative care services?
1
2
3
4
5
6
7
Please select one category for each statement below. Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
51. The evidence about the benefits of providing specialist palliative care services to patients with advanced cancer is very strong.
1
2
3
4
5
6
7
52. Advocating for patient referrals to specialist palliative care services adds value to patient care.
1
2
3
4
5
6
7
53. Advocating for patient referrals to specialist palliative care services costs little time to provide.
1
2
3
4
5
6
7
54. Advocating for patient referrals to specialist palliative care services is part of my daily practice.
1
2
3
4
5
6
7
Appendices 203
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
55. Advocating for patient referrals to specialist palliative care services is simple.
1
2
3
4
5
6
7
56. Health service authorities provide clear guidelines and training about how to advocate patient referrals to specialist palliative care services.
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57. There are sufficient nursing staff to allow nurses to advocate for patient referrals to specialist palliative care services
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58. The in-patient setting supports interventions such as patient referrals to specialist palliative care services.
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59. In the organisation I work, all the necessary resources are available to provide specialist palliative care services where needed.
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60. I can count on support from the management of the organisation I work in when things get tough trying to advocate for patient referrals to specialist palliative care services.
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61. In the organisation I work in, supportive working relationships exist between cancer care services and specialist palliative care services.
1
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204 Appendices
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
62. In the organisation I work in, supportive working relationships exist between cancer nurses and specialist palliative care services.
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63. In the organisation I work in, there is sufficient patient access to specialist palliative care services.
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64. In my workplace, specialist palliative care services accept patients receiving curative cancer treatment.
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65. In my workplace, patients with complex care needs are routinely referred to specialist palliative care services.
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66. My workplace provides healthcare professionals with the training to advocate for patient referrals to specialist palliative care services.
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67. My workplace performs routine needs assessments for patients with advanced cancer.
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68. My workplace provides decision-making tools to assist healthcare professionals decide when to refer patients to specialist palliative care services.
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69. My workplace routinely provides information about specialist palliative care services to patients with advanced cancer.
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Appendices 205
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
70. Most people who are important to me think that I should advocate for patient referrals to specialist palliative care services.
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71. Healthcare professionals with whom I provide patient care think I should advocate for patient referrals to specialist palliative care services.
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72. Nursing colleagues with whom I provide patient care advocate for patient referrals to specialist palliative care services.
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73. Other healthcare professionals with whom I provide patient care advocate for patient referrals to specialist palliative care services.
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74. I can count on support from healthcare professionals with whom I provide patient care when things get tough advocating patient referrals to specialist palliative care services.
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75. Healthcare professionals with whom I provide patient care are willing to listen to my problems with advocating for patient referrals to specialist palliative care services.
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76. Healthcare professionals with whom I provide patient care are helpful with advocating for patient referrals to specialist palliative care services.
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206 Appendices
Please select one category for each statement below. For each statement below, please indicate how often you feel this way:
Never Seldom Some-times
Regularly Often Almost Always
Always
77. When I work with other members of the healthcare team to advocate for patient referrals to specialist palliative care services, I feel optimistic that we will achieve this outcome.
1 2 3 4 5 6 7
78. When I advocate for patient referrals to specialist palliative care services, I feel useful to patients.
1 2 3 4 5 6 7
79. I feel calm when I think about advocating for patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
80. I feel distressed when I think about advocating for patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
81. I feel concerned referrals to specialist palliative care services will jeopardise my relationship with patients.
1 2 3 4 5 6 7
82. I feel frustrated when trying to advocating for patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
83. Emotional fatigue prevents me from advocating for more patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
84. Burnout prevents me from advocating for more patient referrals to specialist palliative care services.
1 2 3 4 5 6 7
Appendices 207
Please select one category for each statement below. Please indicate your level of agreement with the following statements:
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
85. I have a clear plan of how I will advocate for patient referrals to specialist palliative care services.
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86. I have a clear plan when I will advocate for patient referrals to specialist palliative care services.
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87. I have a clear plan with regards to advocating for patient referrals to specialist palliative care services, when patients are not familiar with the service.
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208 Appendices
Strongly Disagree
Disagree Somewhat disagree
Neither agree or disagree
Somewhat agree
Agree Strongly agree
88. I have a clear plan with regards to advocating for patient referrals to specialist palliative care services when there is little time.
1
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89. I have a clear plan with regard to advocating for patient referrals to specialist palliative care services, when other healthcare professionals with whom I provide patient care do not do this.
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90. Advocating for patient referrals to specialist palliative care services is something I do automatically
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91. Advocating for patient referrals to specialist palliative care services is something I do without having to consciously remember.
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92. Advocating for patient referrals to specialist palliative care services is something I start doing before I realise I am doing it.
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93. Do you have any other comments to make about the cancer nursing role in the referral decision-making process for specialist palliative care services?
Free text box provided.
Thank you for taking the time to complete this questionnaire
Appendices 209
QUT HREC approval – cross-sectional study
Appendices 211
QUT HREC approval of amendments – cross-sectional study
From: Human Ethics Advisory Team Sent: Monday, December 19, 2016 5:54 PM To: Patsy Yates; Sarah Northfield Cc: Deborah Smith Subject: Ethics variation ‐ approved ‐ 1600001019 Dear Prof Patsy Yates and Sarah Northfield Approval #: 1600001019 End Date: 8/11/2018 Project Title: Identifying factors that influence referrals to specialist palliative care services for patients with cancer in the in-patient setting This email is to advise that your variation has been considered by the Chair, University Human Research Ethics Committee. This HREC is constituted and operates in accordance with the National Health and Medical Research Council's (NHMRC) National Statement on Ethical Conduct in Human Research (2007). Approval has been provided for: < changes to survey (informed by pilot) Documents approved: Low risk application V2 14/12/16 PICF survey V2 14/12/16 survey V2 14/12/16 Research plan V2 14/12/16 PLEASE NOTE: RESEARCH SAFETY -- Ensure any health and safety risks relating to this variation have been appropriately considered, particularly if your project required a Health and Safety Risk Assessment. CONFLICTS OF INTEREST -- If this variation will introduce any additional perceived or actual conflicts of interest please advise the Research Ethics Advisory Team by return email. Please don't hesitate to contact us if you have any questions. Regards Janette Lamb / Debbie Smith on behalf of Chair UHREC Office of Research Ethics & Integrity Level 4 | 88 Musk Avenue | Kelvin Grove +61 7 3138 5123 humanethics@qut.edu.au http://www.orei.qut.edu.au
Appendices 213
HSANZ approval to distribute survey to Australian nursing
membership
From: Lexy Harris HSANZ <hsanz@hsanz.org.au> Date: 15 February 2016 at 10:22 Subject: RE: Request to survey the HSANZ Nurses' Group for research purposes To: Sarah Northfield <sarah.northfield87@gmail.com>
Dear Sarah
Your request to survey the HSANZ Nurses’ Group has been approved. Please send the information you wish to distribute in due course.
Regards
Lexy
Alexis Harris
Executive Officer
Haematology Society of Australia and New Zealand
145 Macquarie Street
Sydney NSW 2000
PH +61 (0) 2 9256 5456 l Fax +61 (0) 2 9252 0294
hsanz@hsanz.org.au www.hsanz.org.au The information contained within this e‐mail is intended for the named recipients only and it may contain confidential and/or privileged information. If you have received this message in error, you must not copy, duplicate, forward, print or otherwise distribute any information
contained herein, but must ensure that this e‐mail is permanently deleted and advise the sender immediately.
Appendices 215
CNSA approval to distribute survey to membership
From: "Cameron, Kate (Health)" <Kate.Cameron4@sa.gov.au> Date: Sunday, 20 November 2016 at 4:43 pm To: Amy Ribbons <aribbons@cnsa.org.au>, "'northfield.sarah@hdr.qut.edu.a'" <northfield.sarah@hdr.qut.edu.a> Subject: RE: ATTENTION CHAIR OF CNSA RESEARCH COMMITTEE: Request to review research proposal for survey of CNSA Membership
Hi Amy and Sarah
Sarah thank you for your comprehensive survey application, I’m happy to say that your request has been approved by the Research Committee and we will be able to turnaround approval of any adjustments needed when you advise us of this.
Please email me directly with the adjustments request (if it’s needed ).
Cheers
Kate
Appendices 217
Scatterplot for relationship between years of experience as SPCS nurse and analysing behaviours
Figure A2. Scatterplot for relationship between years of experience as SPCS nurse and analysing behaviours
Appendices 219
Scatterplot for relationship between years of experience as SPCS nurse and counselling behaviours
Figure A3. Scatterplot for relationship between years of experience as SPCS nurse and counselling behaviours
Appendices 221
Scatterplot for relationship between years of experience as SPCS nurse and responding behaviours
Figure A4. Scatterplot for relationship between years of experience as SPCS nurse and responding behaviours
Appendices 223
Table M1
Multiple correlation matrix for all regression models (n = 110)
Analysing behaviours
Counselling behaviours
Responding behaviours
Completion of PC specific education
Metropolitan workplace location
Years of experience as cancer nurse
Total motivations score
Total opportunities score
Total capabilities score
Scope to directly refer to SPCS
Pearson Correlation
Analysing behaviours
1.00 - - 0.27 -0.23 0.25 0.49 0.34 0.46 0.29
Counselling behaviours
- 1.00 - 0.42 -0.22 0.18 0.52 0.38 0.49 0.36
Responding behaviours
- - 1.00 0.35 -0.36 0.28 0.53 0.43 0.55 0.56
Completion of PC specific education
0.27 0.42 0.35 1.00 -0.08 0.16 0.40 0.26 0.29 0.20
Metropolitan workplace location
-0.23 -0.22 -0.36 -0.08 1.00 -0.15 -0.19 -0.28 -0.31 -0.32
Years of experience as cancer nurse
0.25 0.18 0.28 0.16 -0.15 1.00 0.22 0.12 0.36 0.22
Total motivations score
0.49 0.52 0.53 0.40 -0.19 0.22 1.00 0.68 0.80 0.23
Total opportunities score
0.34 0.38 0.43 0.26 -0.28 0.12 0.68 1.00 0.66 0.20
Total capabilities score
0.46 0.49 0.55 0.29 -0.31 0.36 0.80 0.66 1.00 0.30
Scope to directly refer to SPCS
0.29 0.36 0.56 0.20 -0.32 0.22 0.23 0.20 0.30 1.00
224 Appendices
Analysing behaviours
Counselling behaviours
Responding behaviours
Completion of PC specific education
Metropolitan workplace location
Years of experience as cancer nurse
Total motivations score
Total opportunities score
Total capabilities score
Scope to directly refer to SPCS
Sig. (1-tailed)
Analysing behaviours
- - - 0.002** 0.007** 0.004** 0.000** 0.000** 0.000** 0.001**
Counselling behaviours
- - - 0.000** 0.01** 0.03* 0.000** 0.000** 0.000** 0.000**
Responding behaviours
- - - 0.000** 0.000** 0.002** 0.000** 0.000** 0.000** 0.000**
Completion of PC specific education
0.002** 0.000** 0.000** - 0.21 0.05* 0.000** 0.003** 0.001** 0.02*
Metropolitan workplace location
0.007** 0.01* 0.000** 0.21 - 0.06 0.03* 0.002** 0.001** 0.000**
Years of experience as cancer nurse
0.004** 0.03* 0.002** 0.05* 0.06 - 0.01* 0.11 0.000** 0.01**
Total motivations score
0.000** 0.000** 0.000** 0.000** 0.03* 0.01** - 0.000** 0.000** 0.007**
Total opportunities score
0.000** 0.000** 0.000** 0.003** 0.002** 0.11 0.000** - 0.000** 0.02*
Total capabilities score
0.000** 0.000** 0.000** 0.001** 0.001** 0.000** 0.000** 0.000** - 0.001**
Scope to directly refer to SPCS
0.001** 0.000** 0.000** 0.02* 0.000** 0.10 0.007** 0.02* 0.001** -
Note. *p < 0.05; ** p < 0.01, PC = palliative care, SPCS = Specialist Palliative Care Services, Sig. = significance.
Appendices 225
Scatterplot for frequency of analysing behaviours model
Figure A5. Scatterplot for frequency of analysing behaviours model
Appendices 227
Scatterplot for frequency of counselling behaviours model
Figure A6. Scatterplot for frequency of counselling behaviours model
Appendices 229
Scatterplot for frequency of responding behaviours model
Figure A7 Scatterplot for frequency of responding behaviours model
Appendices 231
Table Q1
Sequential backward stepwise regression models for analysing behaviours (n = 110)
Analysing behaviours model Variable Β B 95% CI SEB P-value VIF
Model 1
Constant -0.72 [-5.82, 4.38] 2.57 0.78 Completion of palliative care specific education 0.06 0.54 [-1.09, 2.17] 0.82 0.52 1.23 Metropolitan workplace location -0.94 -0.60 [-1.75, 0.55] 0.58 0.31 1.22 Years of experience as cancer nurse 0.10 0.03 [-0.03, 0.09] 0.03 0.26 1.23 Total motivations score 0.38 0.06 [0.12, 0.11] 0.03 0.02* 3.50 Total opportunities score -0.30 -0.00 [-0.04, 0.03] 0.02 0.80 2.09 Total capabilities score 0.06 0.01 [-0.03, 0.05] 0.02 0.72 3.61 Scope to directly refer to SPCS 0.12 0.75 [-0.34, 1.83] 0.55 0.17 1.21 R2 0.302 Adjusted R2 0.254 F 6.30**
Model 2
Constant -0.72 [-5.80, 4.36] 2.56 0.78 Completion of palliative care specific education 0.06 0.53 [-1.09, 2.16] 0.82 0.52 1.23 Metropolitan workplace location -0.09 -.058 [-1.71, 0.56] 0.57 0.32 1.19 Years of experience as cancer nurse 0.11 0.04 [-0.02, 0.09] 0.03 0.24 1.20 Total motivations score 0.37 0.06 [0.01, 0.11] 0.02 0.02* 3.16 Total capabilities score 0.05 0.01 [-0.03, 0.05] 0.02 0.76 3.36 Scope to directly refer to SPCS 0.13 0.75 [-0.33, 1.83] 0.54 0.17 1.21 R2 0.301 Adjusted R2 0.261 F 7.40**
232 Appendices
Analysing behaviours model Variable Β B 95% CI SEB P-value VIF
Model 3
Constant -0.83 [-5.84, 4.17] 2.52 0.74 Completion of palliative care specific education 0.06 0.51 [-1.10, 2.11] 0.81 0.53 1.21 Metropolitan workplace location -0.10 -0.61 [-1.71, 0.49] 0.56 0.27 1.14 Years of experience as cancer nurse 0.12 0.04 [-0.02, 0.09] 0.03 0.18 1.09 Total motivations score 0.40 0.07 [0.04, 0.10] 0.02 0.00** 1.27 Scope to directly refer to SPCS 0.13 0.76 [-0.31, 1.83] 0.54 0.16 1.20 R2 0.30 Adjusted R2 0.27 F 8.94**
Model 4
Constant -1.03 [-5.98, 3.92] 2.50 0.68 Metropolitan workplace location -0.09 -0.60 [-1.70, 0.50] 0.55 0.28 1.14 Years of experience as cancer nurse 0.12 0.04 [-0.02, 0.09] 0.03 0.17 1.09 Total motivations score 0.42 0.07 [0.04, 0.1] 0.01 0.00** 1.10 Scope to directly refer to SPCS 0.13 0.80 [-0.26, 1.86] 0.53 0.14 1.18 R2 0.30 Adjusted R2 0.27 F 11.14**
Model 5
Constant -1.89
[-6.59, 2.80]
2.37 0.43
Years of experience as cancer nurse 0.12 0.04
[-0.02, 0.10]
0.03 0.15 1.08
Total motivations score 0.43 0.07 [0.04, 0.10] 0.01 0.000** 1.09 Scope to directly refer to SPCS
0.16 0.96 [-0.06, 1.98]
0.51 0.06 1.09
R2 0.29 Adjusted R2 0.27 F 14.44**
Model 6
Constant -2.05 [-6.76, 2.66] 2.38 0.39 Total motivations score 0.45 0.08 [0.05, 0.10] 0.01 0.000** Scope to directly refer to SPCS 0.18 1.09 [0.08, 2.10] 0.51 0.03* R2 0.276 Adjusted R2 0.262 F 20.39**
Note. *p < 0.05; ** p < 0.01 B = unstandardized regression coefficient; SEB = standard error of the coefficient; β = standardised coefficient; CI = confidence interval.
Appendices 233
Table R1
Sequential backward stepwise regression models for counselling behaviours (n = 110)
Counselling behaviours model Variable β B 95% CI SEB P-value
Model 1
Constant 0.44 [-5.12, 6.00] 2.80 0.88 Completion of palliative care specific education 0.24 2.47 [0.70, 4.25] 0.90 0.007** Metropolitan workplace location -0.05 -0.39 [-1.65, 0.86] 0.63 0.54 Years of experience as cancer nurse -0.01 -0.01 [-0.07, 0.06] 0.03 0.88 Total motivations score 0.27 0.05 [-0.00, 0.11] 0.03 0.07 Total opportunities score -0.02 -0.00 [-0.04, 0.03] 0.02 0.89 Total capabilities score 0.15 0.02 [-0.02, 0.07] 0.02 0.32 Scope to directly refer to SPCS 0.19 1.33 [0.15, 2.50] 0.59 0.03* R2 0.381Adjusted R2 0.339F 8.98**
Model 2
Constant 0.44 [-5.09, 5.97] 2.79 0.88 Completion of palliative care specific education 0.24 2.47 [0.71, 4.24] 0.89 0.007** Metropolitan workplace location -0.05 -0.38 [-1.61, 0.85] 0.62 0.54 Years of experience as cancer nurse -0.01 -0.00 [-0.07, 0.06] 0.03 0.89 Total motivations score 0.26 0.05 [-0.00, 0.10] 0.03 0.06 Total capabilities score 0.14 0.02 [-0.02, 0.06] 0.02 0.32 Scope to directly refer to SPCS 0.19 1.33 [0.15, 2.50] 0.59 0.03* R2 0.381Adjusted R2 0.345F 10.58**
Model 3
Constant 0.43 [-5.07, 5.93] 0.28 0.88 Completion of palliative care specific education 0.24 2.46 [0.71, 4.21] 0.88 0.006** Metropolitan workplace location -0.05 -0.38 [-1.61, 0.85] 0.62 0.54 Total motivations score 0.26 0.05 [-0.00, 0.10] 0.03 0.06 Total capabilities score 0.14 0.02 [0.06, 0.49] 0.02 0.32 Scope to directly refer to SPCS 0.19 1.32 [2.48, 0.36] 0.59 0.03* R2 0.381Adjusted R2 0.351F 12.81**
234 Appendices
Note. *p < 0.05; ** p < 0.01 B = unstandardized regression coefficient; SEB = standard error of the coefficient; β = standardised coefficient; CI = confidence interval.
Counselling behaviours model Variable β B 95% CI SEB P-value
Model 4
Constant -0.05 [-5.31, 5.22] 2.66 0.99 Completion of palliative care specific education 0.24 2.45 [0.71, 4.20] 0.88 0.006** Total motivations score 0.25 0.05 [-0.00, 0.10] 0.03 0.06 Total capabilities score 0.15 0.02 [-0.02, 0.06] 0.02 0.24 Scope to directly refer to SPCS 0.20 1.41 [0.29, 2.53] 0.56 0.01* R2 0.379Adjusted R2 0.355F 16.02**
Model 5
Constant -0.73 [-5.88, 4.41] 2.60 0.78 Completion of palliative care specific education 0.23 2.36 [0.62, 4.11] 0.88 0.008** Total motivations score 0.38 0.72 [0.40, 0.11] 0.02 0.000** Scope to directly refer to SPCS 0.22 1.54 [0.44, 2.64] 0.55 0.007** R2 0.371Adjusted R2 0.353F 20.81**
Appendices 235
Table S1
Sequential backward stepwise regression models for responding behaviours (n = 110)
Responding behaviours model Variable β B 95% CI SEB P-value
Model 1
Constant -2.68 [-5.34, 0.01] 1.36 0.05 Completion of palliative care specific education 0.11 0.65 [-0.21, 1.52] 0.44 0.14 Metropolitan workplace location -.13 -0.51 [-1.12, 0.10] 0.31 0.10 Years of experience as cancer nurse 0.06 0.01 [-0.02, 0.04] 0.02 0.45 Total motivations score 0.23 0.02 [-0.00, 0.05] 0.01 0.08 Total opportunities score 0.05 0.00 [-0.01, 0.02] 0.01 0.65 Total capabilities score 0.13 0.01 [0.01, 0.03] 0.01 0.32 Scope to directly refer to SPCS 0.38 1.48 [0.90, 2.05] 0.29 0.000** R2 0.53Adjusted R2 0.49F 16.17**
Model 2
Constant -2.69 [-5.38, 0.01] 1.36 0.05 Completion of palliative care specific education 0.11 0.66 [-0.20, 1.52] 0.43 0.13 Metropolitan workplace location -0.13 -0.53 [-1.13, 0.07] 0.30 0.08 Years of experience as cancer nurse 0.05 0.01 [-0.02, 0.04] 0.02 0.48 Total motivations score 0.25 0.03 [0.00, 0.05] 0.01 0.04* Total capabilities score 0.14 0.01 [-0.01, 0.03] 0.01 0.25 Scope to directly refer to SPCS 0.38 1.47 [0.90, 2.04] 0.29 0.000** R2 0.525Adjusted R2 0.497F 18.98**
Model 3
Constant -2.66 [-5.34, 0.03] 1.35 0.05 Completion of palliative care specific education 0.12 0.68 [-0.17, 1.54] 0.43 0.12 Metropolitan workplace location -0.13 -0.53 [-1.13, 0.07] 0.30 0.08 Total motivations score 0.23 0.03 [0.00, 0.05] 0.01 0.05 Total capabilities score 0.17 0.01 [-0.01, 0.03] 0.01 0.15 Scope to directly refer to SPCS 0.39 1.50 [0.93, 2.06] 0.29 0.000** R2 0.523Adjusted R2 0.500F 22.78**
236 Appendices
Note. *p < 0.05; ** p < 0.01 B = unstandardized regression coefficient; SEB = standard error of the coefficient; β = standardised coefficient; CI = confidence interval.
Responding behaviours model Variable β B 95% CI SEB P-value
Model 4
Constant -2.93 [-5.60, -0.27] 1.35 0.03 Completion of palliative care specific education 0.11 0.63 [-0.22, 1.49] 0.43 0.15 Metropolitan workplace location -0.16 -0.63 [-1.22, -0.05] 0.30 0.04* Total motivations score 0.37 0.04 [0.02, 0.06] 0.01 0.000** Scope to directly refer to SPCS 0.40 1.55 [0.99, 2.11] 0.28 0.000** R2 0.513Adjusted R2 0.495F 27.68**
Model 5
Constant -3.18 [-5.84, -0.52] 1.34 0.02* Metropolitan workplace location -0.15 -0.62 [-1.21, -0.03] 0.30 0.04* Total motivations score 0.41 0.04 [0.03, 0.06] 0.01 0.000** Scope to directly refer to SPCS 0.42 1.60 [1.04, 2.16] 0.28 0.000** R2 0.503Adjusted R2 0.489F 35.80**