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 optimise 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, p. 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).
Focusing specifically on critical care discharge, a literature review by McKinney and Melby (2002) highlight 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), self determination and regulation (Deci and Ryan, 1985, Johnson, 1999), uncertainty in illness (Mishell, 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.
Section snippets
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 safety during early critical illness rehabilitation. It explores what is required
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 interventions.1 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
The intervention
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
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
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
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
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 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
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
Conflict of interest
The authors have no conflicts of interest to declare.
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
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