Developing user centred Developing user centred critical care discharge critical care discharge
informationinformation
Suzanne Bench
Florence Nightingale School of Nursing & Midwifery
Background• Critical care discharge is a difficult time for patients and
relatives, requiring effective support strategies to optimize further recovery and rehabilitation (NICE, 2009)
Acutely ill patients• “ should be offered information about their condition and
encouraged to actively participate in decisions related to their recovery…tailored to individual circumstances”. (NICE, 2007: 16; recommendation 1.2.2.16).
Patient focused interventions should be developed that • “recognise the role of participants in the process of
securing appropriate, effective, safe and responsive healthcare” (Coulter and Ellis, 2006:7)
The Medical Research Council framework (MRC 2008) for the
development and evaluation of complex interventions was used as information
meets the criteria of a complex intervention (Campbell et al, 2007)
Florence Nightingale School of Nursing & Midwifery
This phase enabled review of current literature in order to identify:
• Meta-synthesis of the physical and psycho-social problems faced by patients and families at discharge from critical care to a general ward (Bench and Day 2010) • The scope and effectiveness of discharge information strategies currently utilised within critical care and other areas of acute care.• The potential for use of self-assessment and active participation strategies as part of rehabilitation to improve patient safety.
Pre-Clinical Work
Phase IFocus group study
Aim
• To gain user insight into the most effective information strategies, to support the adult patient and their family at the point of discharge from critical care (ICU/HDU) to the ward
Objectives
To elicit the views of patients, families, and health care professionals with regard to:
• The most effective methods of information delivery
• The required information content of any proposed strategies
• The benefits and limitations of any existing strategies
• Any potential resource implications
Focus Group
Number of participants
Type of participant Data collection site
1 4 Patients=2Relatives=2
London
2 3 Patients=2Relatives=1
London
3 8 Patients=4Relatives=4
Coventry
4 4 Patients=2Relatives=2
Coventry
5 3 Critical care nurses London
6 8 Critical care and ward nurses London
7 3 Physiotherapists=2Occupational therapist=1
London
8 9 Medical staff=8Pharmacist=1
London
Considerations related to effective information provision
Enormity of the experience
Relationships Information blockers
The goals of critical care discharge information
Understanding of experience
Supported independence
The Five Rights: Right time, right place, right content, right person,
right amount
Resources
Current information provision
Information tools
Themes and Categories
Data extrapolated from the literature was combined with results of the focus group
study in order to develop a new information strategy focusing on user
participation.
Florence Nightingale School of Nursing & Midwifery
User Centred Critical care Discharge Information Pack (UCCDIP)
• A ‘lay’ patient discharge summary• Separate sections for core patient and relative information• Prompts for patients/families to identify individual needs and related
questions • Provision of a diary• Support resources• Input from critical care and ward staff trained in information delivery
Phase IIRandomised Controlled Trial
Phase II centres around a single centre RCT (n=200) comparing the new information strategy with usual care
Title• User centred active information strategies, for adult
critical care patients and their families, at the point of discharge from critical care to the ward; an exploration of effectiveness and feasibility.
A user centred critical care discharge information pack (UCCDIP) developed with service users, for adult critical care patients and their families, in comparison to usual care, will:
1. Improve the psychological and physical well-being of 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 patients and relatives
4. Be considered feasible from the perspective of patients, relatives and critical care and ward nurses
Hypothesis
Data collection
Cluster randomisation by day of discharge:• Group 1: Usual care (Informal ad-hoc verbal
information)• Group 2: Intervention (UCCDIP)• Group 3: Attention Control (Discharge booklet)
Outcome measures at one week and one month post critical care discharge
User involvement
• Meta-synthesis of the user perspective of critical care discharge (Bench and Day 2010)
• Patients, relatives and health care professionals’ perspective obtained from focus group study
• ‘Expert user group’ convened to inform final development of UCCDIP
• Ex-patients and relatives via ICUsteps and ican-uk websites and a follow up clinic in London involved in RCT
• Ex-ICU patient on investigating team for RCT
Review of all documentation prior to use Assistance with study design and data
analysisContribution to dissemination of results
Conclusions and further work• Integration of the user perspective is key to the development
of any effective intervention (Coulter and Ellis, 2006). This project aims to produce critical care discharge information based on specific research into what patients want
Findings from this study will be used to:• Refine the UCCDIP prior to further evaluation using a larger
multi-site phase III trial• Provide data, to inform the power calculation and sample
size for a phase III trial.
This should ensure that a complex intervention is developed that is both clinically and cost effective
Publications
Bench S, Day T (2010) The user experience of critical care discharge; a meta-synthesis of qualitative research. International Journal of Nursing Studies 47: 487-499
• Bench S, Day T, Griffiths P, (2010) Involving users in the development of effective critical care discharge information: a focus group study with patients, relatives and health care staff. Currently undergoing review by American Journal of Critical care
Acknowledgements
• The focus group study was part funded by the British Association of Critical Care Nurses (BACCN) southern region and the Florence Nightingale School of Nursing and Midwifery, King’s College, London.
• Thanks are extended to both NHS hospitals and all patients, relatives and health care staff who took part in the focus group study, and who provided assistance with recruitment of participants and organisation of focus group meetings.
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