DEVELOPING USER CENTRED CRITICAL CARE DISCHARGE

INFORMATION TO SUPPORT EARLY CRITICAL ILLNESS REHABILITATION

USING THE MEDICAL RESEARCH COUNCIL’S COMPLEX INTERVENTIONS

FRAMEWORK

INTRODUCTION

Discharge from both level 2 (high dependency) and level 3 (intensive therapy) (DH

2000) critical care departments is a difficult time for patients and relatives, requiring

effective support strategies to optimize recovery and rehabilitation (NICE, 2009).

Data from the United Kingdom (UK) suggest that approximately 77% of these

patients are discharged to a general ward (ICNARC, 2008). During and after

discharge, this large group of people may suffer significant psychological and

physiological problems (Bench and Day 2010; Field et al., 2008; Rattray et al., 2010),

which impact on recovery and healthcare resources.

The stress associated with being transferred from one care facility to another is well

documented in the literature. The North American Nursing Diagnosis Association

(NANDA) defines this state as ‘relocation stress’ and describes it as when “a person

experiences physiologic and/or psychological disturbances as a result of transfer

from one environment to another” (Carpenito-Moyet, 2010: Pg 350). According to

NANDA, the defining characteristics of relocation stress include anxiety and

depression, as well as a range of other physical and psychological symptoms

including feelings of insecurity, a lack of trust, dependency, an increased need for

reassurance, concerns about being transferred and an unfavourable comparison of pre

and post transfer staff (Carpenito-Moyet, 2010).

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Focusing specifically on critical care discharge, a literature review by McKinney and

Melby (2002) highlights the complex array of factors that contribute to relocation

stress, including those related to the person (for example, coping resources) and the

environment (for example, noise, lack of privacy, technology). A person’s cognitive

appraisal of the situation has been further identified as an influencing factor (Lazarus

and Folkman, 1984; McKinney and Melby, 2002).

The provision of effective information has an important role to play during this early

rehabilitation period (Bench and Day, 2010; Bench et al., 2011; Forsberg et al., 2011;

NICE, 2007; NICE, 2009). Theories related to stress, coping and adaptation (Lazarus

and Folkman, 1984), uncertainty in illness (Mishel, 1988), adult learning (Knowles,

1981) and person centred care (Rogers, 1951) support the view that critical care

discharge information could be used to improve psycho-social well-being, encourage

independence and positively alter perceptions of this transition period.

This paper details a new critical care discharge information pack: ‘User Centred

Critical care Discharge Information Pack’ (UCCDIP). The structure and content of

UCCDIP are justified, and the methods used for both development and evaluation are

described and discussed.

BACKGROUND

The critical care discharge pack discussed in this paper was developed as part of an

ongoing two-phase project, which aims to improve early critical illness rehabilitation

through the use of user centred information. The project focuses on how information

strategies might best be developed alongside other interventions to encourage

independence, promote physical and psycho-social well being, and improve patient

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safety during early critical illness rehabilitation. It explores what is required from the

service users’ perspective, contributing to the body of knowledge, which recognises

the unique role of the patient and their family during an experience of critical illness.

It further aims to elucidate the impact of offering information in such a way, which

seeks to encourage independence and self- management during early critical illness

recovery. It is anticipated that this programme of multi-professional research, which

involves service users throughout, will produce more effective information relevant to

the early critical care discharge period.

Previous research within intensive care has already highlighted the potential for

information to enhance understanding, reduce anxiety and feelings of uncertainty, and

enable people to contribute meaningfully to decision-making during critical illness

recovery (Carson et al., 2012; Mitchell and Courtney, 2004, 2005; McKinley et al.,

2002). To date, however, few authors (Jones et al., 2003; Mitchell and Courtney,

2004; Kitchens, 2009; Paul et al., 2004) have published papers evaluating the

effectiveness of written critical care discharge information for adults, and no research

has investigated the impact of such information on all service users and healthcare

staff specifically during the early weeks after critical illness.

METHODS USED TO DEVELOP AND EVALUATE UCCDIP

This project follows the framework described by The Medical Research Council

(MRC, 2008) for the development and evaluation of complex interventions1. In

accordance with the principles of this framework, we chose to undertake a phase I

focus group study to elicit the experiences of service users and healthcare staff with

reference to adult critical care discharge and information giving. Details of this study 1 Ethics approvals granted by Charing Cross (08/H0711/110) and Central London REC 3 (10/H0716/75).

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can be found in Bench et al. (2011) and on the ICUsteps website (ICUsteps, 2012).

Together with an extensive review of the literature and collaboration with former

critical care patient and relative groups, findings from this study provided a strong

evidence base for the development of our intervention: a ‘User Centred Critical care

Discharge Information Pack’ (UCCDIP). Evaluation of UCCDIP is currently in

progress (ISRCTN, 2011) using a phase II prospective single centre cluster

Randomised Controlled Trial (RCT) (n=150) to investigate its potential to:

1. Improve the psychological and physical well-being of adult patients leaving

critical care

2. Improve the psychological well-being of relatives when their loved one leaves

critical care

3. Improve the critical care discharge experience for adult patients and relatives

4. Be considered feasible from the perspective of patients, relatives and critical

care and ward nurses.

Service user involvement

Integration of the user perspective is imperative for the development of any effective

intervention (Coulter and Ellis, 2006), and producing health information based on

research into what service users want is vital (Coulter and Ellis, 2006; INVOLVE,

2004). Key ways in which service users have influenced and contributed to this

project can be seen in Box 1.

Insert Box 1 here: Service user involvement

THE INTERVENTION

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Based on reviews of published research (Bench and Day, 2010) and the findings from

our focus group study (Bench et al., 2011), in collaboration with former patients and

relatives (Box 1), we developed a new critical care discharge information pack.

The ‘User Centred Critical Care Discharge Information Pack’ (UCCDIP) consists of

a pack containing two booklets, one directed at the family member(s) and one at the

adult patient. Key elements of this pack can be seen in Box 2. UCCDIP is intended as

a resource to supplement and enhance verbal information delivery by health care staff.

Insert Box 2 here: Key elements of UCCDIP

The aim of UCCDIP is to prepare patients and their relatives for critical care

discharge and support them during the early rehabilitation period on the ward. Both

verbal and written information are important contributors to the provision of effective

support during this period, when used appropriately (Bench et al., 2011). Several

examples of critical care discharge information booklets are available (Carson et al.,

2012; Cutler and Garner, 1995; ICS, 2010; ICUsteps, 2010; Jones and O’Donnell,

1994; Maillet et al., 1993; Paul et al., 2004; SCCM, 2007). However, many of these

have been primarily directed at family members.

UCCDIP is intended for all critically ill patients being discharged to a ward. Colour-

coded sections cover information pertinent to both the pre-discharge period and the

early days (up to one month) on the ward. A review of published literature undertaken

by the project team highlighted that the majority of booklets currently available

consist of information relevant to an extended period of time, sometimes as long a

period as from critical care admission to a year or more after hospital discharge. Our

work suggests that such comprehensive information may be overwhelming for some

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people during early in-hospital critical illness recovery (Bench et al., 2011), and that

bite sized information targeted at key time intervals may be more valuable. This view

is further supported by NICE (2007).

UCCDIP is a simple intervention, requiring minimal staff training. It is a tool which

can be used alongside a range of other strategies; verbal information; critical care

outreach and liaison services; structured rehabilitation programmes, and across

different health care delivery models, making it particularly suitable for widespread

dissemination.

Opportunities for reflection

An important and novel component of UCCDIP is the inclusion of a ‘lay summary’

for the patient. Once a medical discharge decision has been made, using guidelines

prepared by a representative of the ICUSteps charity, the bedside critical care nurse

writes brief sentences on the first page of the patient’s booklet outlining why the

patient was admitted, what happened to them during their stay and how they

responded to their critical care experience. A final check is made by a senior nurse to

ensure no information likely to cause distress or offence is included, and that

appropriate lay language has been used in accordance with the guidelines provided.

The booklet is then given to the patient, prior to their discharge to the ward. In

addition, diary pages are included at the back of both patient and relative booklets to

be used as desired.

Insert Box 3 here: Example lay summary

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The need to include opportunities for people to reflect upon and make sense of their

experience, and to recognise the progress that they have made was strongly

emphasized in our focus group findings (Bench et al., 2011), supporting other

published literature (Bäckman et al., 2010; Phillips, 2011). For example, a qualitative

interview study (n=10) conducted by Forsberg et al. (2011) highlighted the positive

impact of knowing on feelings of control and safety. Diary use during critical care has

already been shown to improve psychological well being post discharge (Jones et al.,

2010; Knowles and Tarrier, 2009; Phillips, 2011). However, despite some research

findings (Bäckman and Walther, 2001) highlighting that patients want diaries to

continue post critical care, this does not appear to be a common feature of current

practice (Phillips, 2011). Diary pages have been included in some previously

published discharge information booklets (Paul et al., 2004). Their inclusion in

UCCDIP hopes to further address this current omission. These diary pages offer

patients the opportunity to take control of what they record, rather than being based

on the assumptions of health care staff and relatives about what might constitute a

significant event (Phillips, 2011).

Diaries can include a front page summarizing why the person was admitted to critical

care (Åkerman et al., 2010; Gjengedal et al., 2010). Extending this idea, and

providing a ‘lay summary’ of events during critical care, for use at the point of

discharge to the ward, could further assist patients’ understanding of their experience

and enhance early recovery.

Individualised information

UCCDIP is centered around the needs of the individual, hence its name ‘User

Centred’. NICE (2007) state that information should be “tailored to individual

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circumstances” (Page 16). Mitchell and Courtney (2004) demonstrated a reduction in

families’ levels of uncertainty during and after critical care discharge with more

individualised information. Evidence from other patient populations further supports

the use of personalised information (McDonald et al., 2004). For example, Taylor et

al. (2010) noted from doctoral work on people with cancer, that tailored information

could help prepare for critical stages of recovery. Combined data from our literature

reviews and focus group study (Bench et al., 2011) highlight that currently used

written information booklets commonly include general discharge information but

frequently fail to address the specific and unique needs of individuals during the early

rehabilitation period. Critical care units admit a wide variety of people with different

diagnoses, medical histories and lengths of stay, all of whom will have an experience

unique to them. UCCDIP aims to provide patients and their relatives with the

personalised information required to enhance recovery.

Core generic information is included in UCCDIP, but each section encourages the

patient and family to ask questions related to their individual circumstances. The

booklets also include space for these to be written down and for information and

advice to be recorded. The individualised and flexible nature of this information pack

makes it suitable for use across a variety of different age groups, levels of illness

severity, and for discharge to a range of different in-hospital destinations.

Supported independence

Coulter and Ellis (2006) argue that, in order to be effective, all healthcare

interventions should recognize the role of patients and family members. According to

NICE (2007), information should be offered that encourages active participation.

Despite this recommendation, many previously developed information booklets

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require no input from the patient. In contrast, UCCDIP is intended to support and

encourage assisted independence, whilst acknowledging patients’ physical and

psychological vulnerability. The sections, which encourage patients and relatives to

consider their own needs and question health care staff so that more collaborative

health care decision-making can take place, help achieve this. Self-directed exercises,

to optimise physical rehabilitation, are also included.

Such information strategies that require active participation could help recovering

patients regain a sense of empowerment potentially lost during their critical care stay,

thus limiting the psychosocial and physiological complications, which prolong

recovery. In support of this, a RCT conducted by Jones et al. (2003) found that a self-

help rehabilitation manual could reduce depression in those recovering from critical

illness.

Self-care is defined by the World Medical Association as “the care taken by

individuals towards their own health and well being” (Webber and Williams, 2006,

pg 67). The World Health Organisation (2009) state that if care effectiveness is

operating through the individual, then this can be defined as self care, regardless of

whether care delivery is ‘care by self’ or ‘care by other’ (DH, 2005). According to

Godfrey et al. (2011), with the exception of the most dependent person (for example,

the unconscious patient) everyone is able to participate in self-care to some extent.

However, in order for self-care to be effective, it might also require ‘support for self

care’ (DH, 2005). One mechanism through which this can be provided is by the use

of information, where “actions are based on information obtained in consultation

with laypersons and professions” (Health Canada, 1997, pg 2).

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Merriman (2008) highlights the importance of underpinning any interventional

strategy with increased patient choice, thus enhancing patient empowerment, an ethos

which Redman (2007) argues, allows healthcare professionals to view patients as

experts in the ability to recognise and manage their own needs (physical,

psychological and emotional). Taylor et al. (2010) support these views commenting

that any rehabilitation intervention should be framed by an ethos of patient

empowerment.

UCCDIP, which requires service user participation (at whatever level the patient is

able to achieve) fits these criteria. Its development and evaluation builds upon

previous successful work related to self care, from other settings. Evidence from the

acute sector suggests that even in the more unwell person, participation strategies are

feasible (Johnson, 2003 cited in DH, 2005; Lee et al., 1998; Petersson et al., 2009),

when the right support is offered. Lee et al. (1998) for example, found that providing

telephone information to critical care patients after hospital discharge enhanced their

ability for self care. Studies from interventional programmes incorporating activities

which enhance control and effective coping strategies provide further evidence of the

potential advantages of such approaches within the paediatric (Melnyk et al., 2004),

and adult (Jones et al., 2003) critical care populations. Other studies also highlight the

potential for people to be active participants in the receipt of information (Holmes and

Lenz, 1997; Malone, 2008). Further, a small study (n=26) by Odell et al. (2010),

examining the feasibility of a patient and relative activated critical care outreach

service, provides some evidence that strategies incorporating service user

participation have the potential to improve patient safety, supporting the view that

people recovering from critical care illness have both the ability and desire to

participate in their rehabilitation.

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DISCUSSION OF RESEARCH METHODS

Numerous factors are likely to influence the success of information strategies used in

the critical care population, thus information giving meets the criteria to be a complex

intervention (Campbell et al., 2007). The evaluation of such information also gives

rise to a number of practical and methodological difficulties (MRC, 2008).

The Medical Research Council (MRC, 2008) framework for the development and

evaluation of complex interventions was therefore selected to guide research

methodologies for this project. No clear linear process is evident in the MRC (2008)

framework. Rather, the importance of a systematic process is stressed, which

addresses as many elements as possible to ensure that any intervention is likely to be

effective in real practice. The MRC (2008) advise that in order for complex

interventions to be effective, extensive pre-clinical and phase I work needs to be

conducted prior to undertaking exploratory phase II and definitive phase III trials.

This meant that mixed methods research, triangulating qualitative and quantitative

data was required to ensure success.

Focus Groups

A qualitative focus group study was chosen to gain user insight from former patients,

relatives and healthcare staff into the critical care discharge information strategies,

most likely to effectively support the adult patient and their family. This method

addresses best practice recommendations by INVOLVE (2004) for service user

involvement in designing and managing healthcare research. Data from this focus

group were used to inform the development of UCCDIP.

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A focus group is a facilitated group interview. It is centred on a specific topic, and

capitalises on the interaction that occurs within the group setting (Sim and Snell,

1996). Focus groups offer participants the opportunity for debate and discussion and

recognise the value and importance of the user voice (Barbour, 2005). Contrary to

group interviewing where the focus is on exchanges between the interviewer and each

participant, in focus group interviews the emphasis is on the interaction between

participants (Litosseliti, 2007). This means that the dynamics of the group and the

personalities of the individuals all contribute to the final data collected, as does the

presence and skills of the group facilitator.

Although focus groups can be cheaper to conduct than individual interviews (Sim,

1998), they require time and effort to ensure success (Barbour, 2005). The optimum

number of group participants is considered to be 6-10 (Freeman, 2006; Kreuger and

Casey, 2000; Sharts-Hopko, 2001). However, it can be difficult to achieve a balance

between having enough variation between participants to obtain contrasting opinions,

whilst avoiding limiting the conversation by including too many diverse people, who

may feel uncomfortable in each others’ presence (Kreuger and Casey, 2000).

Confidentiality is also a difficult issue as it is not possible for the researcher to

guarantee that all participants will adhere to this. These and other challenges

(Litosseliti, 2007; Sim, 1998) require careful consideration to ensure that the data

produced are trustworthy, and thus able to reliably inform future practice.

Randomised Controlled Trials

A prospective single centre cluster RCT was chosen to evaluate the effectiveness of

UCCDIP. RCTs are are the most rigorous way of determining a relationship between

cause and effect (Torgerson and Torgerson, 2008), and make an important

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contribution to the evaluation of health care interventions (Cartwright 2011; Vedelø

and Lomborg, 2011). Whilst it is acknowledged that, due to the complex nature of

nursing, experimental trials have not widely been undertaken in this area (Prescott et

al., 1999; Richards and Hamers, 2009), the MRC’s current view is that the RCT can

be usefully applied to nursing research (MRC, 2008).

The RCT is a quantitative, comparative, controlled experiment (Jadad and Enkin,

2007), designed at the outset to assume there is no difference between groups. There

are two main types of RCTs: explanatory and pragmatic. Our RCT is a pragmatic

trial, designed to test the feasibility and effectiveness of UCCDIP in clinical practice.

In contrast to explanatory RCTs, which measure efficacy (i.e. the capacity to produce

an effect under tightly controlled conditions) pragmatic trials assess whether an

intervention can work in real life (Godwin et al., 2003; Roland and Torgerson, 1998).

The close proximity of patients in critical care increases the potential for

contamination between interventions. Cluster RCTs are designed to overcome this

problem and reduce the chance of individuals influencing each other (Puffer et al.,

2005). In our trial, recruited participants are clustered by day of discharge, to one of

three trial arms to receive either the intervention (UCCDIP), control (ad-hoc verbal

information) or ‘attention control’ (standard discharge booklet). The ‘attention

control’ group attempts to account for any placebo effect caused by the delivery of the

trial intervention (Gross, 2005).

Selecting appropriate outcome measures is an essential component of any RCT. The

main outcome measure selected for this trial was sense of psychological well being,

specifically anxiety and depression. Psychological well-being is a subjective state of

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mental health which is individual to a person (Ryff and Keyes, 1995). The major

defining characteristics of the NANDA definition of relocation stress include anxiety

and depression (Carpenito-Moyet, 2010), justifying these as outcome measures likely

to be sensitive to UCCDIP.

Despite the potential value of RCTs for the evaluation of nursing interventions, the

complexities associated with their design and conduct can make it difficult for trials

of sound methodological quality to be undertaken (Moher et al., 2010). The

Consolidating Standards of Reporting Trials (CONSORT) group provides an evidence

based set of minimum reporting standards to guide best practice (Schulz et al., 2010)

in this area.

CHALLENGES IN THE DEVELOPMENT OF UCCDIP

Conducting research with critically ill patients presents challenges in terms of the

intervention itself and with trial recruitment and data collection. Many people feel

weak and disengaged during early critical illness recovery. Memory and concentration

problems, in addition to physical weaknesses and lethargy (Crocker, 2003; Field et al.,

2008; Griffiths and Jones, 1999; Minton and Carryer, 2005; Strahan and Brown,

2005) add to the complexity of designing an effective intervention and conducting a

robust clinical trial. The specific nature of UCCDIP, which requires input from both

the patient and/or relative and health care staff, is therefore fraught with potential

difficulties. This does not, however, detract from the importance of continued work in

this area, and the value of an ongoing commitment to encouraging patient

participation (at whatever level is possible) using an information pack centred around

each and every person’s individual needs.

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FUTURE RESEARCH

Following completion of the pilot RCT, a multi-centre phase III evaluation of

UCCDIP (either in its current or refined state) is planned across a wider, multi-

cultural population. This should ensure that the final information pack produced is

truly feasible and effective within real clinical practice.

Information provision cannot be considered in isolation and the effectiveness of any

method is dependent upon the context in which it is used (Bench et al., 2011), and on

the skill and competence of the personnel involved. The continued improvement of

the whole discharge process is therefore paramount (Bench et al., 2011). This includes

effective input from both critical care and ward staff trained in information delivery.

Therefore, in addition to further evaluation of user centred information packs, future

research should focus on the most effective methods of educating and supporting the

staff responsible for ongoing critical illness rehabilitation.

Our work has highlighted both the feasibility and value of effective service user

collaboration in developing critical care discharge information, which is not based

solely on the views of health care staff (Ormandy, 2010). Future work should

continue to maximise the involvement of service users; during both the development

of information strategies, and the design and implemention of studies, which seek to

evaluate their effectiveness.

CONCLUSION

Together with other allied projects currently in progress locally, this project aims to

enhance critical illness rehabilitation pathways as advised by NICE (2009). It is

anticipated that this research will produce more effective information relevant to the

3rd February 2012 15

early critical care discharge period, delivered in a way that actively involves the adult

patient and their family.

UCCDIP could enhance the discharge experience for a large number of patients and

their relatives, and help alter current perceptions of abandonment identified from the

literature (Bench and Day, 2010; Field et al., 2008; Forsberg et al., 2011). Our

findings to date support those from other studies, which highlight the value of

individualised information to optimise critical illness rehabilitation for both patients

(Jones et al., 2003; Paul et al., 2004,) and relatives (Kitchens, 2009; Mitchell and

Courtney, 2004, 2005; Paul et al., 2004). Studies conducted with other acute care

populations further support these views (Gronnestad and Blystad, 2004; Lautrette et

al., 2007; Linton et al., 2008; Taylor et al., 2010; Timmins and Kaliszer, 2003).

Further development of such strategies, which emphasize empowerment and help

patients to access and understand information, could help address the criticism that in-

hospital information commonly fails to meet patients’ needs (Suhonen et al., 2005).

By helping patients understand their experience, recognize the progress they have

made and influence their expectations about what they can achieve, UCCDIP has

further potential to improve the discharge experience.

The aim of UCCDIP is not to reduce time spent with patients providing verbal

information, but to make more effective use of health care staff' time. It is intended

that it will be made available via the ICU steps charity website (ICUsteps, 2012) so it

can be freely accessed, reducing the need for others to waste resources designing

similar packs.

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The MRC (2008) advise that in order to produce an effective complex intervention

extensive pre-clinical and phase I work is required. This project has followed this

process. UCCDIP therefore has great potential to be clinically effective and feasible

within real world clinical practice. Optimisation of other aspects of the discharge

process is, however, also required to maximise any likely benefits.

WORD COUNT 4195

FUNDING

The focus group study was part funded by the British Association of Critical Care

Nurses (BACCN) southern region. Funding from the National Institute of Health

Research (NIHR), Research for Patient Benefit (RfPB) programme has been awarded

to the RCT. This report presents independent research commissioned by the NIHR

under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number

PB-PG-0110-21026). The views expressed are those of the authors and not

necessarily those of the NHS, the NIHR or the Department of Health.

ACKNOWLEDGEMENTS

The authors would like to acknowledge the rest of the phase II project team (Dr Philip

Hopkins, Intensive Care Consultant, Kings College Hospital; Peter Milligan,

Statistician, King’s College, London; Professor Lucy Yardley, Health Psychologist,

University of Southampton; Karina Heelas, Research nurse, Kings College Hospital;

and Catherine White, service user). In addition, Professor Alison Metcalfe (Professor

of Health Care Research at King’s College, London) is acknowledged for her role as

Principal academic PhD supervisor. Finally, thanks are extended to all patients,

relatives and health care staff involved in this project, and to the ICUsteps charity for

their continued support.

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CONFLICT OF INTEREST

The authors have no conflicts of interest to declare.

3rd February 2012 18

REFERENCES

Åkerman E, Granberg-Axéll A, Ersson A, Fridlund B, Bergbom I. Use and practice of

patient diaries in Swedish intensive care units: a national survey. Nursing in Critical

care 2010; 15(1): 26-33.

Bäckman C, Orwelius L, Sjöberg F, Fredrikson M, Walther S. Long-term effect of the

ICU-diary concept on quality of life after critical illness. Acta Anaesthesiologica

Scandinavica 2010; 54(6): 736-43.

Bäckman C, Walther S. Use of a personal diary written on the ICU during critical

illness. Intensive Care Medicine 2001; 27(2): 426-9.

Barbour R. Making sense of focus groups. Medical Education 2005; 39(7): 742-50.

Bench S, Day T. The user experience of critical care discharge; a meta-synthesis of

qualitative research. International Journal of Nursing Studies 2010; 47(4): 487-99.

Bench S, Day T, Griffiths P. Involving users in the development of effective critical

care discharge information: a focus group study with patients, relatives and health

care staff. American Journal of Critical Care 2011; 20(6):1-10.

Campbell N, Murray E, Darbyshire J, Emery J, Farmer A, Griffith F et al. Designing

and evaluating complex interventions to improve healthcare. British Medical Journal

2007; 334(7591): 455-9.

Carpenito-Moyet L. Handbook of nursing diagnosis, 13th edition. Lippincott Williams

&Williams, Philadelphia, 2010.

3rd February 2012 19

Carson S, Vu M, Danis M, Camhi S, Scheunemann L, Cox C et al. Development and

validation of a printed information brochure for families of chronically critically ill

patients. Critical Care Medicine 2012; 40(1): 73-8.

Cartwright N. The art of medicine; a philosopher’s view of the long road from RCTs

to effectiveness. Lancet 2011; 377(9775): 1400-1401.

Coulter A, Ellis J. Patient focused interventions; a review of the evidence. The Health

Foundation 2006; http://ww.health.org.uk. [Accessed 23rd May 2011].

Crocker C. A multidisciplinary follow-up clinic after patients' discharge from ITU.

British Journal of Nursing 2003; 12(15): 910-4.

Cutler L, Garner M. Reducing relocation stress after discharge from the intensive

therapy unit. Intensive and Critical Care Nursing 1995; 11(6): 333-5.

Department of Health (DH). Comprehensive critical care; a review of adult critical

care services, 2000; London, DH.

Department of Health (DH). Self care; a real choice. Self care support- a practical

option, 2005; London, DH.

Field K, Prinjha S, Rowan K. One patient amongst many: a qualitative analysis of

intensive care unit patients' experiences of transferring to the general ward. Critical

Care 2008; 12(1): R21.

Forsberg A, Lindgren E, Engström Å. Being transferred from an intensive care unit to

a ward: searching for the known in the unknown. International Journal of Nursing

Practice 2011; 17(2): 110-6.

3rd February 2012 20

Freeman T. 'Best practice' in focus group research: making sense of different views.

Journal of Advanced Nursing 2006; 56(5): 491-7.

Gjengedal E, Storli S, Holme A, Eskerud R. An act of caring-patient diaries in

Norwegian intensive care units. Nursing in Critical Care 2010; 15(4): 176-84.

Godfrey C, Harrison M, Lysaght R, Lamb M, Graham I, Oakley P. Care of self-care

by other-care of other: the meaning of self care from research, practice, policy and

industry perspectives. International Journal of Evidence-Based Healthcare 2011; 9(1):

3-24.

Godwin M, Ruhland L, Casson I, MacDonald S, Delva D, Birtwhistle R et al.

Pragmatic controlled clinical trials in primary care: the struggle between external and

internal valdidity. BioMed Central (BRC) Medical research Methodology 2003; 3: 28.

Available online at: www.biomedcentral.com/1471-2288/3/28 [Accessed 9th

September 2011].

Griffiths R, Jones C. ABC of Intensive Care; Recovery from intensive care. British

Medical Journal 1999; 319(7207): 427-9.

Gronnestad B, Blystad A. Patients' experiences with information in connection with

an operation-a qualitative study. Nordic Journal of Nursing Research and Clinical

Studies 2004; 24(4): 4-8.

Gross D. On the merits of attention-control groups. Research in Nursing and Health.

2005; 28(2): 93-4.

3rd February 2012 21

Health Canada. Supporting self care: the contribution of nurses and physicians: an

exploratory study. Health Canada Publications, Brooke Claxton Building, Tunney's

Pasture, Postal Locator: 0913A, Ottawa, Ontario, 1997.

Holmes K, Lenz E. Perceived self care information needs and information seeking

behaviours before and after elective spinal procedures. Journal of Neuroscience

Nursing 1997; 29(2): 79-85.

Intensive Care National Audit and Research Centre (ICNARC). Admissions to the

ward. Case mix programme database. ICNARC, London, 2008.

Intensive Care Society (ICS) Discharge from Intensive Care; information for patients

and relatives. Intensive Care Society 2010; http://www.ics.ac.uk. [Accessed 23rd May

2011].

ICUsteps. Intensive care; a guide for patients and relatives. ICUsteps; the intensive

care patient support charity 2010; http://icusteps.org/guide[Accessed 3rd February

2012].

ICUsteps. User centred critical care discharge information. ICUsteps; the intensive

care patient support charity 2012; http://icusteps.org/patients/research/critical-care-

discharge-information [Accessed 3rd February 2012].

INVOLVE. Involving the public in NHS, public health and social care research;

briefing notes for researchers 2004. Available online at:

www.invo.org.uk/keypublications.asp [Accessed 23rd May 2011].

3rd February 2012 22

International Standard Randomised Controlled Trial Number Register (ISRCTN).

Evaluation of a critical care discharge information pack 2011; http://www.controlled-

trials.com/ISRCTN47262088/ISRCTN47262088 [Accessed 3rd February 2012].

Jadad A, Enkin M. Randomized Controlled Trials; questions, answers and musings.

Second edition. BMJ books, Blackwell publishing, Oxford, 2007.

Jones C, Bäckman C, Capuzzo M, Egerod I, Flaaten H, Granja C et al. Intensive care

diaries reduce new onset post traumatic stress disorder following critical illness: a

randomized controlled trial. Critical Care 2010; 14(5): R168. Available online at:

http://ccforum.com/content/14/5/R168 [Accessed 10th January 2012].

Jones C, O'Donnell C. After intensive care-what then? Intensive and Critical Care

Nursing 1994; 10(2): 89-92.

Jones C, Skirrow P, Griffith R, Humphris G, Ingleby S, Eddleston J et al.

Rehabilitation after critical illness: a randomized controlled trial. Critical Care

Medicine 2003; 31(10): 2456-61.

Kitchens J. Effectiveness of an Intensive Care Unit Transfer Brochure on Family

Members' Associated Knowledge and Anxiety. Clinical Nurse Specialist 2009; 23(2):

99.

Knowles M. The modern practice of adult education: from pedagogy to androgogy.

The Adult Education Company, New York, 1981.

Knowles R, Tarrier N. Evaluation of the effect of prospective patient diaries on

emotional well-being in intensive care unit survivors: a randomized controlled trial

2009; 37(1): 184-91.

3rd February 2012 23

Kreuger R, Casey M. Focus groups, Sage publications, London, 2000.

Lautrette A, Darmon M, Megarbane B, Joly L, Chevret S, Adrie C et al. A

communication strategy and brochure for relatives of patients dying in the ICU. The

New England Journal of Medicine 2007; 356(5): 469-78.

Lazarus R, Folkman S. Stress appraisal and coping. Springer, New York, 1984.

Lee N, Wasson D, Andreson M, Stone S, Gitings J. A survey of patient education post

discharge. Journal of Nursing Quality Assurance 1998; 13(1): 63-70.

Linton S, Grant C, Pellegrini J. Supporting families through discharge from PICU to

the ward: the development and evaluation of a discharge information brochure for

families. Intensive and Critical Care Nursing 2008; 24(6): 329-37.

Litosseliti L. Using focus groups in research. Continuum, London, 2007.

Maillett R, Pata I, Grossman S. A strategy for decreasing anxiety of ICU transfer

patients and their families. Nursing Connections 1993; 6(4): 5-8.

Malone M. Health information seeking and use of the internet among families with

young children in an inner city area. PhD, Florence Nightingale School of Nursing

and Midwifery. King's College, London, 2008.

McDonald S, Hetrick S, Green S. Pre-operative education for hip or knee

replacement. Cochrane Database of Systematic Reviews 2004, Issue 1. Art. No.:

CD003526. DOI: 10.1002/14651858.CD003526.pub2.

3rd February 2012 24

McKinley S, Nagy S, Stein-Parbury J, Bramwell M, Hudson J. Vulnerability and

security in seriously ill patients. Intensive and Critical Care Nursing 2002; 18(1): 27-

36.

McKinney A, Melby V. Relocation stress in critical care: a review of the literature.

Journal of Clinical Nursing 2002; 11(2): 149-57.

Medical Research Council (MRC). Developing and evaluating complex interventions:

new guidance. Medical Research Council; http://www.mrc.ac.uk/index.htm; 2008;

[Accessed 23rd May 2011].

Melnyk B, Alpert-Gillis L, Feinstein N, Crean H, Johnson J, Fairbanks E et al.

Creating opportunities for parent empowerment: program effects on the mental

health/coping outcomes of critically ill young children and their mothers. Pediatrics

2004; 113(6): 597-607.

Merriman M. Pre hospital discharge planning: empowering elderly patients through

choice. Critical Care Nursing Quarterly 2008; 31(1): 52-8.

Minton C, Carryer J. Memories of former intensive care patients six months following

discharge. Contemporary Nurse 2005; 20(2): 152-8.

Mishell M. Uncertainty in illness. IMAGE: Journal of Nursing Scholarship 1988;

20(4): 225-32.

Mitchell M, Courtney M. Reducing family members' anxiety and uncertainty in

illness around transfer from intensive care: an intervention study. Intensive and

Critical Care Nursing 2004; 20(4): 223-31.

3rd February 2012 25

Mitchell M, Courtney M. Improving transfer from the intensive care unit: the

development, implementation and evaluation of a brochure based on Knowles' Adult

Learning Theory. International Journal of Nursing Practice 2005; 11(6): 257-68.

Moher D, Hopewell S, Schulz K, Montori V, Gøtzsche P, Elbourne D et al.

CONSORT 2010: Explanation and elaboration: updated guidelines for reporting

parallel group randomised trials. British Medical Journal 2010; 340: 1-28.

National Institute for Health and Clinical Excellence (NICE) Acutely ill patients in

hospital; recognition and response to acute illness in adults in hospital. NHS National

Institute for Health and Clinical Excellence; www.nice.org.uk; 2007; [Accessed 23rd

May 2011].

National Institute for Health and Clinical Excellence (NICE) Rehabilitation after

critical illness. NHS National Institute for Health and Clinical Excellence;

www.nice.org.uk; 2009; [Accessed 23rd May 2011].

Odell M, Gerber K, Gager M. Call 4 concern: patient and relative activated critical

care outreach. British Journal of Nursing 2010; 19(22): 1390-5.

Ormandy P. Defining information need in health-assimilating complex theories

derived from information science. Health Expectations 2010; 14(1): 92-104.

Paul F, Hendry C, Cabrelli L. Meeting patient and relatives' information needs upon

transfer from an intensive care unit: the development and evaluation of an information

booklet. Journal of Clinical Nursing 2004; 13: 396-405.

Petersson P, Springett J, Blomqvist K. Telling stories from everyday practice, an

opportunity to see a bigger picture: a participatory action research project about

3rd February 2012 26

developing discharge planning. Health and Social care in the Community 2009; 17(6):

548-56.

Phillips C. Use of patient diaries in critical care. Nursing Standard 2011; 26(11): 35-

43.

Prescott R, Counsell C, Gillespie W, Grant A, Russell I, Kiauka S et al. Factors that

limit the quality, number and progress of randomised control trials. Health

Technology Assessment 1999; 3(20): 1-143.

Puffer S, Torgerson D, Watson J. Cluster randomized trials. Journal of Evaluation in

Clinical Practice 2005; 11(5): 479-83.

Rattray, J., Crocker C, Jones M, Connaghan J. Patients' perceptions of and emotional

outcome after intensive care: results from a multicentre study. Nursing in Critical

Care 2010; 15(2): 86-93.

Redman B. Responsibility for control; ethics of patient preparation for self

management of chronic disease. Bioethics 2007; 21(5): 243-50.

Richards D, Hamers J. RCTs in complex nursing interventions and laboratory

experimental studies. International Journal of Nursing Studies 2009; 46(4): 588-592.

Rogers C. Client centred therapy. Its current practice, implications and theory.

Houghton Mifflin, Boston, 1951.

Roland M, Torgerson D. Understanding controlled trials: what are pragmatic trials?

British Medical Journal 1998; 316(7127): 285.

3rd February 2012 27

Ryff C, Keyes C. The structure of psychological well-being revisited. Journal of

Personality and Social Psychology 1995; 69(4): 719–27.

Schulz K, Altman D, Moher D for the CONSORT group. CONSORT 2010

Statement: updated guidelines for reporting parallel group randomised trials. British

Medical Journal 2010; 340: c332.

Sharts-Hopko N. Research column. Focus group methodology: when and why?

JANAC: Journal of the Association of Nurses in AIDS Care 2001; 12(4): 89-91.

Sim J. Collecting and analysing qualitative data: issues raised by the focus group.

Journal of Advanced Nursing 1998; 28(2): 345-52.

Sim J, Snell J. Focus groups in physiotherapy evaluation and research. Physiotherapy

1996; 82(3): 189-98.

Society of Critical Care Medicine (SCCM) ICU issues and answers: what I should

expect after leaving the ICU. SCCM 2007; www.myicucare.org ; [Accessed 23rd May

2011].

Strahan, E, Brown R. A qualitative study of the experiences of patients following

transfer from intensive care. Intensive & Critical Care Nursing 2005; 21(3): 160-71.

Suhonen R, Nenonen H, Laukka A, Välimäki M. Patients' informational needs and

information received do not correspond in hospital. Journal of Clinical Nursing 2005;

14(10): 1167-76.

Taylor C, Richardson A, Cowley, S. Restoring embodied control following surgical

treatment for colorectal cancer: A longitudinal qualitative study. International Journal

of Nursing Studies 2010; 47 (8): 946-56.

3rd February 2012 28

Timmins F, Kaliszer M. Information needs of myocardial infarction patients.

European Journal of Cardiovascular Nursing 2003; 2(1): 57-65.

Torgerson D, Torgerson C. Designing randomised trials in health, education and the

social sciences; an introduction. Palgrave MacMillan, Hampshire, 2008.

Vedelø T, Lomborg K. Reported challenges in nurse-led randomised controlled trials:

an integrative review of the literature. Scandinavian Journal of Caring Sciences 2011;

25(1): 194-200.

Webber D, Williams J. A discussion paper on the future of self care and its

implications for physicians. World Medical Journal 2006; 52(3): 66-72.

World Health Organisation (WHO) Self care in the context of primary healthcare:

report of the regional consultation 2009, Bangkok, Thailand. New Delhi: WHO-

Regional office for South East Asia. Available online at:

http://www.searo.who.int/LinkFiles/Health_System_Strengthening_SEA-HSD-

320.pdf. [Accessed 23rd May 2011].

3rd February 2012 29