CARE QUESTIONS STUDY

1. CARE QUESTIONS STUDY Developing Improved Survey Questions on Older People’s Receipt of, and Payment for, Formal and Informal Care

2. AIMS OF THE WORKSHOP • To present the purpose, methods, key findings and outputs of the study • To discuss the new module of survey questions with commissioners of research and surveys, academics and local authority commissioners and performance managers • To launch the new module for use in surveys and economic evaluations in the future

3. AIMS OF THE STUDY To produce modules of questions on: • receipt of care services by older people; • payment for care services, and • provision and receipt of informal care, that would be suitable for: • longitudinal or cross-sectional population surveys covering community-based care, • economic evaluations.

4. COVERAGE • Community-based social care services • Direct Payments and Personal Budgets • Privately-purchased care • Community equipment • Frequency/intensity of service receipt • User contributions/charges for social services • Informal care by relatives and friends (receipt and provision)

5. RESEARCH TEAM • Margaret Blake, Michelle Gray, Meera Balarajan, at the NatCen; • Ruth Hancock, Adam Martin, Marcello Morciano, Miranda Mugford, Ian Shemilt, at the University of East Anglia; • Raphael Wittenberg, Adelina Comas-Herrera, Robin Darton, Jose-Luis Fernandez, Cate Henderson, Derek King, Juliette Malley, Linda Pickard, at the PSSRU.

6. FUNDERS • The Department of Health funded stage one • The Nuffield Foundation funded stage two.

7. BACKGROUND • Current information sources do not provide the type of robust data on care services required for policy development. • The debate on financing social care requires robust data on who receives care, who pays for care and how much they pay. • Personalisation, such as personal budgets, is not reflected in surveys and may blur the difference between paid and unpaid care.

8. STAGE ONE • a review of questions on receipt of formal and informal care in existing surveys; • a consultation with stakeholders for their views on existing survey questions and the potential for data linkage; and • a systematic review of economic evaluations which included questions to service users or their carers on the types, amounts and costs of formal social care services.

9. STAGE TWO • preparation of a draft questionnaire module on the basis of stage one; • consultation with an expert panel on the questionnaire content; • conducting two rounds of cognitive testing of a draft module; • after further review, finalising a module of questions, for use in surveys.

10. Thank you r.wittenberg@lse.ac.uk www.natcen.ac.uk www.uea.ac.uk www.lse.ac.uk www.kent.ac.uk

11. Why is this question module needed? Review of questions on receipt of formal care in existing surveys Derek King Research Fellow Personal Social Services Research Unit at LSE

12. Questions on receipt of formal care What coverage of questions on formal care services and frequency of receipt of services? And how well linked to questions on disability and payment for services? Response rates? Methodological issues

13. Questions on receipt of formal care Existing questions on receipt of formal care Nationally representative samples: General Household Survey (GHS) 2001/2 ELSA Wave 3 (2006) Health Survey for England (HSE) 2005 Family Resources Survey (FRS) 2004/5 British Household Panel Survey (BHPS) 2007 Other: The PSSRU 2005 Home Care Survey Partnerships for Older People Projects (POPP)

14. Questions on receipt of formal care Coverage GHS 2001/2: comprehensive services and frequency; includes ADLs and IADLs; little data on payment; not asked since 2001/2 ELSA Wave 3 (2006): most services; little data on frequency; includes ADLs and IADLs; little data on payment HSE 2005: comprehensive services and frequency; no ADLs or IADLs; no data on payment FRS 2004/5: limited services; no ADLs or IADLs BHPS 2007: limited services; limited ADLs/IADLs; asked if services received free or paid for

15. Questions on receipt of formal care Response rates very good in GHS, HSE and ELSA Wave 3; FRS imputed non-responses PSSRU 2005 Home Care Survey: good on questions regarding receipt of services and Attendance Allowance; lower response rate to questions on the receipt of pensions, other benefits POPPS: variation in response rates by type of service and age of respondent

16. Methodological issues Comprehensive questions on formal services received and frequency of receipt Receipt of private home care often reported without any difficulty with ADLs or IADLs Interest is in care arising from disability Private home care: care purchased privately without the involvement of the council or care provided by the private sector but arranged and/or subsidised by council?

17. Thank you d.king@lse.ac.uk www.natcen.ac.uk www.uea.ac.uk www.lse.ac.uk www.kent.ac.uk

18. A systematic review of existing surveys A review of the methods used to identify and measure resource use in economic evaluations Adam Martin Postgraduate Researcher Health Economics Group at UEA

19. Overview Objective To critically assess the strengths and limitations of existing surveys and questions used to collect resource use and/or cost data Inclusion criteria Full or partial economic evaluations Information about the types, amounts, or costs of community-based formal social care Majority of respondents should be over 65 years UK populations Self reported data from service users or their carers Any publication date

20. Methods Methods followed published guidelines (Shemilt at al, 2008) Various outcome measures were proposed Including type and perspective of economic evaluation, method of data collection, resource use and cost items included, overall response rate, and methods of validation. Five databases were included, as well as Grey Literature Ovid Medline, Ovid Embase, the Cumulative Index to Nursing and Allied Health Literature, PsycINFO and the NHS Economic Evaluation Database.

21. PRISMA flow diagram

22. Results Headlines Information for full data extraction was commonly left unreported Majority of included studies were simple cost analyses Modified versions of the CSRI were found The details of individual questions were rarely reported 40% reported response rates 22% reported recall periods Conclusion Economic evaluations are seldom reporting on the use of published validated questions

23. Thank you adam.martin@uea.ac.uk Adam Martin, Alex Jones, Miranda Mugford, Ian Shemilt, Ruth Hancock, Raphael Wittenberg.

24. Developing & testing the questions: qualitative research and cognitive interviews Michelle Gray and Meera Balarajan (NatCen)

25. The importance of involving stakeholders • Importance of involving stakeholders in the survey development • To provide context • As a scoping exercise • Terminology used • What can and can’t be asked • Often useful to involve ‘experts’ early stages of any research, but not always possible

26. Questionnaire Design Methods • In-depth qualitative interviews • Focus groups • Expert panel • Cognitive interviews • CAPI Pilot

27. In-depth interviews with care providers • 13 in-depth interviews with service providers • Aims: • To explore the complexities of the social care system • To explore what could and could not be asked • Recruited and carried out by (NatCen) research team • Range of different providers consulted (next slide) • Extremely useful in developing the questions

28. In-depth interviews with care providers • Local Authority Providers • NHS Provider • Private Sector Provider • Voluntary Sector Provider • ‘Informal’ carers

29. Findings from In-depth Interviews • Key terms are not consistently used, are open to interpretation and should be avoided • ‘carer’ • Variations in social care provision between areas • Some terms are already out of date • ‘Domiciliary care’

30. Findings from In-depth Interviews • Other terms may become out of date: • Personal budget/Direct payments • Certain areas should be possible to ask • Care received – in specific areas of personal need • Other areas service users may lack knowledge • Arrangements of care services • Assessments • Funding of care services

31. Focus groups with service users • 2 focus groups with service users • Aims: • To explore the level of knowledge people have • To explore terminology • Recruited and carried out by (NatCen) research team • Range of different kinds of service users participated • Extremely useful in developing the questions

32. Focus groups with service providers • 2 Focus Groups • 6 Participants Each • Range of ages • Men and women • Range of health Status

33. Findings from focus groups • Key terms are not consistently used, are open to interpretation and should be avoided: • ‘social care’ • Service users do know • details of what they receive help with • the name of the person (or organisation) providing the service • whether they pay all or none

34. Findings from focus groups • Certain areas should be avoided • Qs about assessments • Qs about funding arrangements (i.e. LA & NHS funded) • The boundary between the LA (social services) and the NHS is blurred

35. Other findings from Qualitative work • Questions should be positively phrased • Necessary to ask about equipment and adaptations such as alarms (or telecare) and transport • Day care services extend beyond the location of the day centre

36. Other findings from Qualitative work • It’s possible to involve proxy respondents, who may know some of the details the service user lacks • Care needs to be taken in asking about money as servicer users often think that they are paying too much for their care

37. Cognitive Interviewing • Two rounds of cognitive interviews • 1st round Paper • 2nd round CAPI (with showcards) • 56 respondents interviewed in total • Range of different users • Different ages and geographical areas • Revisions made as result of problems identified between rounds

38. Questions developed are on: Care Receipt (Section A) • A1: Help needed and received with ADLs/IADLs • A2: Who helps with tasks • A3: Intensity of care (hours) • A4: Patterns of care • A5: Payments for care • A6: Meal provision, lunch clubs and day care attendance • A7: Aids and equipment

39. Questions developed are on: Provision of care (Section B) • B1: Help provided in the last month and who helps • B2: Intensity of care (hours) • B3: Details of what help is given, payments received and support • B4: Effects of caring

40. Example findings for Care Receipt • Task based approach • Easy for respondents • Structure approach • What is help and how to define it in the module?

41. Example findings for Care Provision • Should I count this time when I’m thinking about how many hours I receive help or support with?

42. Post Cognitive Work • Discussions within the team • Second Expert Panel including users • Discussions with the HSE and ELSA team • Piloted in HSE • Dress Rehearsal in HSE

43. Outputs • Length of administration of module • A long module • A short module

44. What the new questions mean for future research and data Margaret Blake, NatCen Linda Pickard, PSSRU Ruth Hancock, UEA

45. Overview of the questionnaire module Margaret Blake, Research Director, Questionnaire Development and Testing Hub, National Centre for Social Research (NatCen)

46. WHAT THE MODULE OFFERS • Focus on: • people aged 65+ • living in the community • Task based approach • Policy relevant: • Up to date • Flexible for future changes • Designed for use in England

47. IMPLEMENTATION OF THE MODULE Long and Short Standard questions Existing and new surveys General and specialist surveys Additional questions needed

48. LONG AND SHORT MODULES Receipt • Help needed and received with ADLs and IADLs • Who helps • Intensity of care (hours) • Patterns of care • Payments for care • Other services used • Aids and Equipment

49. LONG AND SHORT MODULES Provision • Provision of informal care (any age) • Intensity of care (hours) • Patterns and type of care • Effects of caring

50. HELP AND SUPPORT RECEIVED • 13 ADLs/ IADLs: • need • receipt • For each group of tasks • informal providers • formal providers • For each provider • number of hours in last week • patterns of care (long)