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

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

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.

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)

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.

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

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.

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.

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.

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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

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

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)

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

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

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?

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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

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

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.

PRISMA flow diagram

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

Thank you Adam Martin, Alex Jones, Miranda Mugford, Ian Shemilt, Ruth Hancock, Raphael Wittenberg.

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

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

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

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

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

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’

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

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

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

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

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

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

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

Cognitive Interviewing Two rounds of cognitive interviews 1 st round Paper 2 nd 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

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

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

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

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

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

Outputs Length of administration of module A long module A short module

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

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

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

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

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

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

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)

PAYMENT SECTION Direct Payments and Personal Budgets Was LA involved Two routes through payments: A.Formal providers arranged through LA (grouped) B.Other formal providers and informal providers (20+ hours)

SERVICES, AIDS AND EQUIPMENT Services: meals lunch clubs day centres Aids and Equipment: alarms, stairlifts, other mobility housing handyman services

PROVISION OF INFORMAL CARE Ask all adults aged 16+ Whether provided help to someone age 65+ Who is helped Amount and nature of help provided Effects of caring and support used Mirrors receipt of care module

Questions on informal care receipt and provision Linda Pickard Senior Research Fellow Personal Social Services Research Unit (PSSRU)

Questions on informal care receipt Existing questions on informal care receipt Ask older people with functional disabilities who helps them Surveys include ELSA and (until recently) GHS Questions work reasonably well But current survey questions are limited – do not cover Amount of care received Help with specific tasks Payments for informal care

New questions on informal care receipt Key improvement is new question on amount of help received “[HelpHours] Thinking about [person who helps], in the last week how many hours have they helped you in person with these kinds of tasks? No help in the last week Less than one hour 1-4 hours 5-9 hours hours hours hours hours 100 hours or more”

New questions on informal care receipt New module also adds to existing surveys by asking about Help with specific tasks (some banding of tasks) Whether informal care receipt is co-resident or extra-resident Gender of care-provider Payments for informal care (up to 2 informal carers, where care provided for 20 hours a week or more) Relevance to future research Relationship between disability and intensity of informal care How far are there payments in exchange for informal care?

Questions on informal care provision Existing questions on informal care provision For example, BHPS, FRS, Census, ELSA, GHS Variations in prevalence rates between surveys More due to differences in survey methods than to differences in questions But existing questions are limited – e.g. do not tend to cover Information on person cared for Information linked to specific individuals cared for

New questions on informal care provision Key improvement is that new module includes questions on characteristics of people cared for – e.g. their age “[Helpno] How many people aged 65 and over do you provide this type of help to?” “[Agehlp] How old is your [answer at PrRel]?” “[Gendhlp] Is your [answer at PrRel] male or female?”

New questions on informal care provision New module includes other information linked to specific individuals cared for Hours of care provided (up to 3 people cared for) Tasks with which help given (up to 2 people cared for, where care provided for 20 hours a week or more) Relevance to future research Informal care provided specifically to older people Hours of care provided to specific cared-for people, allowing for analysis of amount of spouse/intergenerational care

Questions on payments for care – a more detailed look Ruth Hancock Health Economics Group University of East Anglia

Questions on payments for care received Aimed to establish gross cost of the formal services received contributions, if any, to that cost from user and LA payments for informal care LA involved in arranging care: recipient will have an ‘income assessment’ and usually charged some of the cost of the care LA not involved: user will meet all cost

A complicated area LA can be involved in a number of non mutually exclusive ways Direct Payments (DP) from a LA cash to spend on formal or informal care services Personal Budgets (PB) from a LA an identified sum of money; user chooses how to allocate among services can, but need not, be delivered as a DP Formal care services arranged by a LA, with user input Policy interest in DPs & PBs

Cover payments in respect of all formal care providers arranged after consulting a LA (including where LA has just given advice) Cover payments for informal care only for providers who give 20+ hours per week Cover payments for a max. of 2 informal carers/ formal carers arranged without consulting a LA (only 1 if also has care arranged after consulting a LA) Designed to identify care most likely to be paid for but won’t give total payments for people with > 2 carers arranged without LA We don’t expect respondent to know gross cost of care A pragmatic solution (1)

If respondent receives formal care or 20+ hrs from 1+ informal carer, establish whether respondent has a DP and/or has council-managed money for social care and/or has a PB and/or has had an income assessment Questions above asked once per care recipient A pragmatic solution (2)

Route A: for formal care providers where LA was involved ask: whether respondent pays, how much (long module only), whether anyone else pays (e.g. LA, family), whether pays from DP or other sources whether payment covers all cost Route B: for selected informal carers and formal carers where LA not involved if Route A asked, route B is asked once, otherwise route B asked for up to 2 carers priority given to formal carers, then informal carer providing most hours (subj. to a min of 20 hrs) questions as for route A A pragmatic solution (3)

Outputs from payments Establish whether User pays all User pays none (LA pays) User pays some (LA pay for some but user tops it up)

Module designed to be used so please use (and provide feedback) Can be used in existing surveys or in standalone surveys (but assumes questions on demographics, disability etc. of respondent already asked) Recommend it is used consistently but short and long modules provide flexibility Very pleased that HSE and ELSA will be using it. Conclusion

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Adoption of the Questions on Existing Surveys: Health Survey for England/ Health and Social Care Survey Rachel Craig, NatCen Jo Thompson, NatCen

The Health Survey for England Series of annual health surveys 2011 will be the 21st Commissioned by the Department of Health up to 2004, NHS Information Centre from 2005 Conducted by NatCen and UCL from 1994 Becomes the Health and Social Care Survey from 2011

The Health Survey for England Authoritative source of health statistics Trends over 15+ years Widely used by government, NHS, academics HSE 4 th most frequently used dataset in UK data archive

Important features of HSE General population survey, not those visiting hospital/ GPs, so prevalence/ undiagnosed conditions Single data source combining survey data and objective measures for the same individuals All household members interviewed Adults & 2 children aged 0-15 Enables intra-household analysis

Social care in the HSE Social care is central part of IC remit “The NHS Information Centre is England's central, authoritative source of health and social care information for frontline decision makers. Our aim is to revolutionise the use of information to improve decision making, deliver better care and realise increased productivity.” An increasingly important policy area with ageing population, changing social structures Move towards self directed support, personalisation Need information about need/ unmet need, how care is funded

HSCS 2011 From 2011, new module on social care Sample size around 8,000 adults Focus on CVD: Continue trends from 1994, 1998, 2003, 2006 Also self-reported usual drinking behaviour and 7-day drinking diary

Core topics Socio-economic and demographic data Health: General health, long standing conditions, diabetes, hypertension, mental health Social care Lifestyle factors : Smoking, drinking, fruit and vegetable consumption Measurement of height and weight (BMI) Nurse visit: Blood pressure, waist and hip circumference Blood, urine and saliva samples

HSE – special topics in different years CVD Respiratory health Physical activity Boosts of older people, younger people, minority ethnic groups

HSE – linkage to admin data Linkage to Mortality Cancer Hospital episodes statistics

How social care fits in the HSE Social care data important to establish prevalence of care need and provision Link between social care and physical and mental health, wellbeing (Limiting) longstanding illness Blood pressure, obesity, lifestyle factors Potential for further links to HES, mortality and HSE widely used as comparator Potential for (qualitative) follow up

Social care module in the HSE The challenge for the HSE: Five minutes of interview time on average Time cap for maximum session to limit the interview burden Many modules especially time intensive for 65+ So shorter module required But hope to have an HSE year with older boost, and full social care module

Social care module in the HSE Social care module sectionWho is asked Receipt of care Need and receipt of care65+ Who provides care65+ who receive care Hours of care provided65+ who receive care Payments for care65+ who receive care Services used 65+

Social care module in the HSE Social care module sectionWho is asked Provision of care Whether provide informal care16+ Characteristics of people cared for 16+ who provide care Hours of care provided16+ who provide care Effects of caring16+ who provide care

HSE social care pilot July - August interviews achieved Context of HSE interview Sample of people with care needs aged 65+ Including those with Direct Payments Very long! But very informative Minor amendments made

HSE Dress Rehearsal August – September interviews achieved General population sample Full HSE interview Timing seemed about right

HSE social care : decisions Much discussion about ADLs and IADLs – crucial foundation to rest of module Different interview experience for those with no social care needs and severe needs Seeking clear explanations of the funding options Thinking through desired analysis outcomes

When will HSE data be available? Fieldwork 2011 Report published online December 2012 Data available in archive around March 2013 Sample of around 1600 people aged 65+ Data on carers among sample of around 8000 adults aged 16+

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