Measuring Outcomes for Carers for People with Mental Health Problems
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Measuring Outcomes for Carers for People with Mental Health Problems Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO) September 2005 Prepared by Kate Harvey* Amy Langman† Hannah Winfield† Jocelyn Catty† Sarah Clement‡ Sarah White† Ellen Burns§ Tom Burns¶ *Department of Psychology and Clinical Language Sciences, University of Reading, Reading, †Division of Mental Health, St George’s, University of London, London, ‡Faculty of Health and Social Care, London South Bank University, London, §freelance researcher and ¶Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford Correspondence to Dr Kate Harvey, Lecturer, School of Psychology and Clinical Language Science, University of Reading, Earley Gate, Whiteknights, PO Box 238, Reading RG6 6AL Tel: 0118 378 7524; fax: 0118 378 6715; e-mail: [email protected] Measuring outcomes for carers for people with mental health problems Contents Acknowledgements 5 Executive Summary Objectives 6 Methods 6 Results 7 The Report Section 1 Background 9 1.1 Informal caregiving 9 1.2 Psychometric assessment 9 1.3 Terminology 10 Section 2 Aims 12 Section 3 Consultation exercise 13 3.1 One-to-one interviews and focus groups 13 3.1.1 Methods 13 3.1.2 Results 15 3.2 Conference questionnaire 24 3.2.1 Methods 24 3.2.2 Results 24 3.3 Summary of outcomes identified in the consultation exercise 26 3.4 Development of ‘importance to carers’ criterion 26 Section 4 Review of the literature 30 4.1 Methods 30 4.2 Results 31 Section 5 Instrument assessment 33 5.1 Methods 33 5.1.1 Framework for assessment 33 5.1.2 Criteria, indicators and benchmarks 33 5.1.3 Data extraction and assessment 36 5.2 Results: measures used three or more times 37 5.2.1 Published measures developed for carers for people with mental health problems or dementia 37 5.2.2 Published measures developed for non-carer populations 76 5.3 Results: measures from 1994 onwards used fewer than three times 180 5.3.1 Published measures developed for carers for people with mental health problems or dementia 181 ©NCCSDO 2006 2 Measuring outcomes for carers for people with mental health problems 5.3.2 Published measures developed for non-carer populations 224 5.4 Results: unpublished measures 242 5.4.1 Questionnaire 1 242 5.4.2 Questionnaire 2 243 5.4.3 Questionnaire 3 243 5.4.4 Questionnaire 4 243 5.4.5 Questionnaire 5 243 5.4.6 Questionnaire 6 243 5.5 Summary of results: measures used three or more times 243 5.5.1 Measures developed for use with carers for people with mental health problems or dementia 243 5.5.2 Measures developed for use with non-carers 245 5.6 Summary of results: measures from 1994 onwards used fewer than three times 247 5.6.1 Measures developed for use with carers for people with mental health problems or dementia 247 5.6.2 Measures developed for use with non-carers 249 Section 6 Discussion 250 6.1 Limitations 250 6.1.1 Time frame 250 6.1.2 Response to conference questionnaire 250 6.1.3 The concept of an ‘outcome measure’ 250 6.1.4 Representativeness of participants in the consultation exercise 251 6.2 Consultation exercise 251 6.3 Literature review 252 6.4 Instrument assessment 253 Section 7 Synthesis 254 7.1 Which outcome to assess 254 7.2 Importance of the instruments’ constructs to carers 254 7.3 Other carer-focused criteria (involvement, acceptability and appropriateness) 256 7.4 Reliability 257 7.5 Validity 258 7.6 Responsiveness 258 7.7 Precision 259 7.8 Interpretability 259 7.9 Feasibility 259 7.10 Range of constructs assessed 260 7.11 Outcomes important to carers for which no instruments have been developed 261 7.12 Carers from minority groups 261 7.13 Methods of assessment 261 7.14 Summary 261 Section 8 Review of findings 265 ©NCCSDO 2006 3 Measuring outcomes for carers for people with mental health problems 8.1 Approaches to assessment 265 8.2 Candidate measures for use or further development 265 8.2.1 Instruments that assess carers’ well-being 266 8.2.2 Instruments that assess the experience of caregiving 267 8.2.3 Instruments that assess carers’ needs for professional support 268 Section 9 Recommendations 270 References 1 Cited articles not pertaining to instruments reviewed in the instrument assessment exercise 272 References 2 Original articles pertaining to the 49 instruments used three or more times 272 References 3 Additional articles pertaining to the 49 instruments used three or more times 278 References 4 Original articles pertaining to the 15 instruments developed in the last 10 years and used fewer than three times 285 References 5 Additional articles pertaining to the 15 instruments developed in the last 10 years and used fewer than three times 287 References 6 Articles pertaining to ineligible instruments 291 Appendices 293 Appendix 1 Topic guide used in interviews 293 Appendix 2 List of outcomes used in interviews as a prompt 297 Appendix 3 Questionnaire used in interviews 298 Appendix 4 Conference questionnaire 301 Appendix 5 Literature review search terms 307 Appendix 6 Ineligible instruments 311 ©NCCSDO 2006 4 Measuring outcomes for carers for people with mental health problems Acknowledgements This study was made possible by the 86 carers, representatives of carer organisations and service providers who gave up their time to participate in interviews or complete a conference questionnaire. Thanks are due to Age Concern Lambeth, Alzheimer Society, Asian Health Agency, Carer Support Merton, Carer UK, Crossroads Care, Cumberland Day Centre, Effra Day Centre, Family Welfare Organisation Building Bridges, Jewish Care, Lambeth Carers, Lambeth Social Services, Lewisham Carers, Mind (National Association for Mental Health), Princess Royal Trust for Carers, Sainsbury Centre for Mental Health and Wandsworth Carers, who provided us with access to carers and carer representatives, and in particular Rethink, who also distributed a questionnaire at their conference on our behalf. Thanks are also due to Sarah Turner and Paul Farmer for their support throughout the project. This study was enabled by a grant from the National Co-ordinating Centre for NHS Service Delivery and Organisation. ©NCCSDO 2006 5 Measuring outcomes for carers for people with mental health problems Executive Summary Objectives We aimed to review available outcome measures and, on the basis of consultation with a diverse range of carers, generate data with which to advise the National Co- ordinating Centre for NHS Service Delivery and Organisation (SDO) programme of: • instruments that could be used to measure the outcomes of services from carers’ perspectives; • the further work required to develop these instruments so that they are robust; • any outcomes considered important by carers for which measures have not been developed. Methods Consultation exercise A consultation exercise was conducted with carers, representatives of carer organisations and service providers, to determine which outcomes they considered important. This comprised one-to-one interviews and focus groups with all three groups of stakeholders, and a questionnaire survey of the views of delegates at a carers' conference. Literature review We conducted a literature review to identify papers describing instruments measuring outcomes for carers for people with mental health problems and dementia. This comprised electronic searches of Medline (1966–) and PsycINFO (1999–), hand-searching of key journals and obtaining unpublished measures from carer organisations. To be included, papers needed to describe an outcome measure used with carers for people with mental health problems and dementia. Instrument assessment To be included in the instrument assessment, measures needed to have been used in studies assessing carer outcomes and either (a) to have been used three times or more, not including by the instruments’ authors, or (b) to have been developed in the 10 years prior to the review. Psychometric data on acceptability, appropriateness, reliability, validity, responsiveness, precision and interpretability were extracted and, where appropriate, rated according to pre-determined benchmarks. In addition, the importance to carers for the construct measured and carer involvement in the development of the measure were assessed and rated on ©NCCSDO 2006 6 Measuring outcomes for carers for people with mental health problems the basis of the consultation-exercise findings and the data presented by the authors respectively. Results Consultation exercise Forty-four carers, eight carer representatives and four service providers were consulted individually or through focus groups, representing a broad range of views. Carers and representatives of carers from minority groups tended to contribute additional information to the discussion, such as the importance of addressing language issues when designing questionnaires, rather than different views about which outcomes were important. There was little consensus about important outcomes, most participants considering most outcomes important and favouring the assessment of a broad range of outcomes to capture carers’ holistic experience. There was greater consensus among participants that carers disliked closed- question questionnaires, especially when sent by post, and preferred semi- structured interviews. Literature review We found around 500 published papers, referring to 241 outcome measures used with carers. Forty-nine met inclusion criterion (a), used three times or more, not including by the instruments' authors, and 15 met inclusion criterion (b), developed in the 10 years prior to the review (1994 or later), providing a total of 64 measures eligible for review. Six unpublished measures were provided by carer organisations. Instrument assessment Most measures (39) had been developed for use with populations other than carers. The degree and quality of the psychometric testing conducted varied, although there was a trend for measures developed for non-carer populations to be the better validated. Carers had rarely been involved in item generation, even when the measure was developed specifically for them, although their involvement was more common in the recently developed measures.