Developing user centredDeveloping user centred
critical care dischargecritical care discharge
informationinformation
Suzan...
Background
• Critical care discharge is a difficult time for patients and
relatives, requiring effective support strategie...
The Medical Research Council
framework (MRC 2008) for the
development and evaluation of complex
interventions was used as ...
This phase enabled review of current literature in order
to identify:
• Meta-synthesis of the physical and psycho-social
p...
Phase I
Focus group study
Aim
• To gain user insight into the most effective information
strategies, to support the adult ...
Focus
Group
Number of
participants
Type of participant Data collection site
1 4 Patients=2
Relatives=2
London
2 3 Patients...
Considerations related to effective information provision
Enormity of the
experience
Relationships Information blockers
Th...
Data extrapolated from the literature was
combined with results of the focus group
study in order to develop a new
informa...
User Centred Critical care Discharge
Information Pack (UCCDIP)
• A ‘lay’ patient discharge summary
• Separate sections for...
Phase II
Randomised Controlled Trial
Phase II centres around a single centre RCT
(n=200) comparing the new information str...
A user centred critical care discharge
information pack (UCCDIP) developed with
service users, for adult critical care pat...
Data collection
Cluster randomisation by day of discharge:
• Group 1: Usual care (Informal ad-hoc verbal
information)
• Gr...
User involvement
• Meta-synthesis of the user perspective of critical care
discharge (Bench and Day 2010)
• Patients, rela...
Conclusions and further work
• Integration of the user perspective is key to the development
of any effective intervention...
Publications
• Bench S, Day T (2010) The user experience of critical care
discharge; a meta-synthesis of qualitative resea...
Acknowledgements
• The focus group study was part funded by the British
Association of Critical Care Nurses (BACCN) southe...
Thank you for listening
suzanne.bench@kcl.ac.uk
Florence Nightingale School of Nursing & Midwifery
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Developing user centred critical care discharge information

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  • Nationally, in 20072008,
    77% of patients admitted to a critical care unit survived and were discharged to a ward
    (ICNARC, 2008). This large group of patients suffer significant psychological problems including feelings of anxiety,
    fear and insecurity (NICE, 2007; Bench and Day, 2010) which impact on recovery and NHS resources. Effective and
    timely information delivery has been identified as a key factor affecting psychosocial
    well being in the early post critical
    care recovery period (Bench and Day 2010). Recent Department of Health publications (NICE 2007 and 2009) support
    this view yet little evidence currently exists to guide practice.
    For these reasons, this project focuses on improving the patient experience and patient outcomes.
    Few studies have evaluated the effectiveness of critical care discharge information. Jones et al (2003) demonstrated in
    their RCT that a self help rehabilitation manual could reduce depression in critically ill patients, providing some
    evidence to support a participatory approach. Mitchell and Courtney (2004) also demonstrated a reduction in families’
    levels of uncertainty with more individualised information. Evidence from other patient populations further supports the
    use of personalised information. A Cochrane review by McDonald et al (2004), for example, found some evidence of
    benefit when preoperative education was tailored to individual need. Such strategies could help critically ill patients’
    regain a sense of empowerment potentially lost during their critical care stay, reducing the psychosocial
    and
    physiological complications which prolong recovery from critical illness.
  • The UCCDIP aims to ensure patients and their family members/carers receive the personalised information required
    to enhance patient recovery. It is anticipated that this research will produce more effective information relevant to the
    early critical care discharge period, delivered in a way that involves the patient and their family. The pack is intended to be flexible, and to support and encourage assisted independence. It recognises the different
    information needs of patients and family members/carers, acknowledges the physical and psychological vulnerability
    of both the patient and the family member/carer at this point in time, and acknowledges the patients’ need to
    understand what they have been through and have evidence of the progress they have made. 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 inhospital
    destinations.
    The pack will be given to the patient (and/or family member/carer as appropriate) by the critical care bedside nurse
    when the decision to discharge to a ward has been made. The intervention in this study offers an alternative method of
    provision rather than being an additional intervention. It has been developed with and reviewed by a range of service
    Full Set of Project Data IRAS Version 3.0
    10
    DRAFT
    The pack is intended to be flexible, and to support and encourage assisted independence. It recognises the different
    information needs of patients and family members/carers, acknowledges the physical and psychological vulnerability
    of both the patient and the family member/carer at this point in time, and acknowledges the patients’ need to
    understand what they have been through and have evidence of the progress they have made. 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 inhospital
    destinations.
    The pack will be given to the patient (and/or family member/carer as appropriate) by the critical care bedside nurse
    when the decision to discharge to a ward has been made
  • Psychological wellbeing
    will be assessed using the Hospital Anxiety and Depression Scale (HADS) score (Zigmond
    and Snaith, 1983) for both patients and identified family members. HADS is a selfassessment
    screening tool,
    designed to detect depression and anxiety (Zigmond and Snaith, 1983), which has been extensively validated (Bjelland
    et al, 2002). A total score >8 for either depression or anxiety indicates the presence of disorder. In addition, coping,
    selfefficacy
    and empowerment assessment tools will be used to further assess psychological wellbeing.
    Questionnaires will be used to assess patients' and relatives’ perception of their discharge experience and to
    determine the feasibility of the intervention. Questionnaire items reflect key themes identified from the focus group
    study. Expert user groups (consisting of participants from a phase I focus group study and user support groups) will be
    used to test the validity and reliability of questionnaires prior to use.
    Hospital databases and medical records will provide access to information related to patient and family
    demographics, relevant past medical history (including a history of depression or anxiety), admitting diagnosis, patient
    illness severity, length of critical care stay, therapies received, discharge destination and complications
  • Awaiting funding outcome from Research for Patient benefit (NIHR, DoH) and ethics approval
    Data collection to commence in December 2010
  • Developing user centred critical care discharge information

    1. 1. Developing user centredDeveloping user centred critical care dischargecritical care discharge informationinformation Suzanne Bench Florence Nightingale School of Nursing & Midwifery
    2. 2. 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)
    3. 3. 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
    4. 4. 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
    5. 5. Phase I Focus 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
    6. 6. Focus Group Number of participants Type of participant Data collection site 1 4 Patients=2 Relatives=2 London 2 3 Patients=2 Relatives=1 London 3 8 Patients=4 Relatives=4 Coventry 4 4 Patients=2 Relatives=2 Coventry 5 3 Critical care nurses London 6 8 Critical care and ward nurses London 7 3 Physiotherapists=2 Occupational therapist=1 London 8 9 Medical staff=8 Pharmacist=1 London
    7. 7. 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
    8. 8. 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
    9. 9. 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
    10. 10. Phase II Randomised 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.
    11. 11. 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
    12. 12. 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
    13. 13. 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 analysis Contribution to dissemination of results
    14. 14. 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
    15. 15. 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
    16. 16. 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.
    17. 17. Thank you for listening suzanne.bench@kcl.ac.uk Florence Nightingale School of Nursing & Midwifery
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