1. Making a Break: Developing methods for measuring the impact of respite services Catherine Murdoch Rosemary Chesson Health Services Research Group The Robert Gordon University Aberdeen, Scotland

2. Changing nature of respite Shift of emphasis to see benefits for cared for as well as carer Evolving terminology (trends to short short-breaks) Greater range of respite provision and often seen as by-product of other services e.g. day care

3. Definition: Respite... any service of limited duration which benefits a dependant person... respite care should be a positive experience for the cared for person and the carer... respite care... may extend from a few hours to a few weeks. Guidance on Respite Care: Scottish Office 1996

4. Increased interest in respite National Level Carers Strategy (2000) The promotion of new and more flexible services for carers including respite at a local level Local level Development of respite strategies Voluntary and statutory sector Production of respite directories by voluntary agencies e.g. MS Society

5. Project Development Project developed by The Robert Gordon University and Shared Care Scotland Funded by the Community Fund

6. Need for research Most research based in USA Most research related to older people with dementia/children with learning disabilities Few studies on cost effectiveness Dearth of Scottish research, Lindsay et als The Patchwork Quilt main source of info

7. Need for research cont... We all accept that respite services are beneficial, but where is the hard evidence that I can use when decisions have to be made and other services can point to more measurable benefits NHS Trust Manager

8. Aims of the study The main aims of this study are: 1.Investigate the role of respite care for a) children with complex needs and their carers b) adults with learning disabilities and their carers c) people with multiple sclerosis and their carers d) people with mental health problems and their carers e) frail older people and their carers 2.Identify the most appropriate outcome measures for the use with the above groups in the evaluation of respite care

9. Research Design Literature search and review An interview survey of carers and the people they care for

10. Literature search and review Grey literature (material which is semi published, not formally published or available commercially) Published literature

11. Grey literature SIGLE Contact universities Visited organisations

12. Published literature Database searched (medline, cinahl, psyclit, ASSIA) Key terms used (respite, short breaks, carer(s), caregiver(s), etc) Tabulated

13. Interview survey Ethical approval Development of information leaflets Development of interview schedule (including the respite checklist)

14. Recruitment Identification of key organisations Identification of key people Visits to day centres, health terms

15. Interview survey Interviews Semi-structured interviews with all participants In addition completion of: - Hospital Anxiety and Depression Scale (HADS) - Nottingham Health Profile (NHP) - Social Support Questionnaire (SSQ)

16. Hospital Anxiety and Depression Scale Anxiety: I can sit at ease and feel relaxed - definately - usually - not often - not at all Depression: I look forward with enjoyment to things - as much as I ever did - rather less than I used to - definitely less than I used to - hardly at all

17. Nottingham Health Profile Im tired all the time yesno I have pain at night yesno I sleep badly at night yesno

18. Social Support Questionnaire Whom could you really count on to help out in a crisis situation, even though they would have to go out of their way to do so? No one1) 2) 3) How satisfied? Very satisfied through to very dissatisfied

19. Interviews 60 people interviewed Diverse range of participants

21. Interviews Problems with pairs Interviewee may not have a carer Participants pair did not wish to participate Carer indicated the person they care for would be unable to take part

22. Interview survey: Analysis Transcriptions of interviews Data input into the Statistical Package for Social Science (SPSS) Summaries of interviews Collation of quotations

23. Reflection on methods Value of interviews Differing understanding of services

24. Findings Previous research (literature review) Participants Use of validated measures (NHP, HADS, SSQ) Functions of respite

25. Literature review Grey literature: Difficult to access (time consuming) Frequently qualitative methods Majority of items one-off evaluations

26. Grey Literature Problematic: Information missing (data/info on respondents) Low response rates Copies of reports incomplete Lobbying for services

27. Published literature Majority of USA origin Mainly focused on children with learning disabilities and older people with dementia Carer perspective Needs related Few studies examing effects of respite/use of outcome measures

28. Effectiveness of Respite Not possible to do meta-analysis because of the great diversity in study design types of intervention, settings of intervention and variety or outcome measures McNally et al, 1999

29. Post McNally Overall lack of coherence 4 UK studies - lack of definition - different care groups - findings inconclusive

30. Interview Study Participants 20 men : 40 women 17 paired interviews 8 Frail older 5 Multiple Sclerosis 1 Mental health 3 Learning Disabilities Age range 30 - 92

31. Participants GroupCarerCared for Total Frail, elderly 11 9 20 Multiple Sclerosis 5 11 16 Mental health 2 1 3 Learning disabilities 10 3 13 Chdn. complex needs 8 - 8 All 36 24 60

32. Caring Relationships Hu cared for by wife Mo caring for sonPartner caring for partner Hu carer to wife Mo caring for dauBoth carers/ both with disabilities Fa carer to son Mo cared for by dauFrd help/care for friend (m) Fa carer for dau Wife carer to hu Fa cared for by dau Wife cared for by hu Son cared for by father Dau cared for by mo Dau cares for mo Dau cares for fa Sr caring for bro Mo-in-law cared for by dau-in-law Dau-in-law cares for mo-in-law

33. Outcome measures Nottingham Health Profile Completed by24/29 cared for 34/36 carers Scores ranged from2 – 12 for carers 9 – 18 for cared for (max 35)

34. Outcome measures cont... HADS Completed by 53 interviewees Differences between depression and anxiety scores 8 carers had scores indicative of moderate/severe levels of anxiety

35. Outcome measures cont... SSQ Completed by 50 interviewees AberdeenStrathclydeLochaber Median (range) Median (range) Median(range) n=25 n=19 n=6 Carer (n=35)6 (3-18) 7 (2-13) 7.5 ( 4-16) Cared for (n=15)4 (2-11) 4 (3-8) 3.5 (3-4)

36. Respite use n=48 Residential care18 Respite in own home13 Hospital respite12 Emergency respite5 Family-based respite3

37. Knowledge of respite % None16 A little45 Didnt know10 28% indicated a great deal

38. Knowledge of respite cont... Knowledge appeared limited to own experience Narrow range of services Didnt know how to access services directly themselves Not in touch with other respite users Not members of carers/respite organisation Confused regarding entitlements Confused regarding definitions

39. Definitions of respite Help around the house or something? Im not entirely sure. Mr. X I didnt know what it is called... somebody there said what that was they were there for – so I thought I must be here for it as well. Mrs. BB

40. Definitions of respite If my MS got worse from what I understand its just like an assisted living place isnt it?..... if you feel sick and cannot take care of yourself, then you need respite... Mrs. F

41. Definitions of respite Well Ive never been down that avenue... I daresay the Carers Centre does respite in peoples homes, but they dont call it respite... I cant remember what they do call it. Carer DD

42. What are respite services? Well, day care I would say that is respite for me. I would say as the carer its respite for me. Also community carer that mum gets, again is respite for me. Carer EE Well actually, I dont actually (see it as respite) because I dont see the personal assistant and I dont see Rs day centre as respite. I see it as a bonus. Carer Z

43. What is respite care? It would just like him to be settled in a nice place and then he can come back to us for respite, but her will have his home, his other home, to go to. Carer JJ

44. Respite provided different functions for different people Give time for other family members Help cared for prepare for future Help carer when tired/ill Enable carer to cope in crisis

45. Changing needs But as you get older your respite needs change totally. Youre not needing out for social activities or Rs social activities. Its physical health wise every way you need the respite. It changes over the years. Carer FF

46. Different functions My husbands mother died quite suddenly last year and that was down in Glasgow. We were able to have emergency respite through (named service). They were super. It was super not to have to worry about (our young daughter). Carer I

47. Changing needs So the respite element has taken over more of a kind of respite role compared to what our original intention was which was the independence thing. But I think the way things are moving just now, and as we become less able to deal with A, as we would want is also due to physical reasons. I mean there used to be a day when she was smaller, she would dump herself on the floor and I would life her up. I couldnt attempt to do that now. Carer GG

48. Changing needs Carers expressed concerns about deteriorating health Yes, I had a kidney removed about six years ago. I had a terrible time with her then. I wasnt at all well and trying to cope with her. I look back now, I dont know how I survived. Carer QQ

49. Different functions I think what shes got next week is classed as emergency respite because I was so upset and I was really scared that I would do her damage. I had to stop myself because I would have and I am scared if I was, I wouldnt know when to stop and I dont want to do that and I dont want her to feel that shes not wanted because I do love her and I do want her, but I just want a wee bit of life to myself and its very difficult. Carer N

50. Partnership working Promoted by Development of project Advisory Group/Regular meetings Discussion of research Joint presentations at meetings

51. Partnership working Facilitating factors Shared values Shared aims and objectives Feeling of joint ownership Regular contact Joint presentations

52. Partnership working Main challenges Geographical distance between partners Difference in working practices Changes in staffing On occasions over expectations of each other

53. Main implications of research 1.Outcome measure to blunt esp: - diversity in caring relationships and situations - problems identifying respite care (diffs term.) 2.Complexity of evaluating the effects of respite – large numbers of variables to control, and changing needs 3.Problems isolating effects of respite from other service provision and family support systems

54. Issues Develop a realistic research Agenda Respite projects within Health Services Research Group Strategic Development Respite Proposal for Aberdeen City Council 1999 Respite: Definitions and Policy Project for MS Society 2000 Review of MS Society Holiday Homes in Scotland (for MS Society) 2001 Advise on Respite Directory for MS Society 2002

55. Issues cont... Caution regarding evidence-based agenda (policy makers/managers) Reconcile right to privacy/consent to research and need for research Distinguish core respite from by-products of other services Acknowledge every scenario may be different and change over time