Making a Break: Developingmethods for measuring the impact

of respite services

Catherine MurdochRosemary Chesson

Health Services Research GroupThe Robert Gordon University

Aberdeen, Scotland

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

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

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

Project Development

• Project developed by The Robert Gordon University and Shared Care Scotland

• Funded by the Community Fund

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 al’s The Patchwork Quilt main source of info

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

Aims of the study

The main aims of this study are:

1. Investigate the role of respite care fora) children with complex needs and their carersb) adults with learning disabilities and their carersc) people with multiple sclerosis and their carersd) people with mental health problems and their carerse) 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

Research Design

• Literature search and review

• An interview survey of carers and the people they care for

Literature search and review

• Grey literature (material which is semi published, not formally published or available commercially)

• Published literature

Grey literature

• SIGLE

• Contact universities

• Visited organisations

Published literature

• Database searched (medline, cinahl, psyclit, ASSIA)

• Key terms used (respite, short breaks, carer(s), caregiver(s), etc)

• Tabulated

Interview survey

• Ethical approval

• Development of information leaflets

• Development of interview schedule (including the respite checklist)

Recruitment

Identification of key organisations

Identification of key people

Visits to day centres, health terms

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)

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

Nottingham Health Profile

• I’m tired all the time yes no

• I have pain at night yes no

• I sleep badly at night yes no

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 one 1)

2)

3)

How satisfied? Very satisfied through to very dissatisfied

Interviews

• 60 people interviewed

• Diverse range of participants

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

Interview survey: Analysis

• Transcriptions of interviews

• Data input into the Statistical Package for Social Science (SPSS)

• Summaries of interviews

• Collation of quotations

Reflection on methods

• Value of interviews

• Differing understanding of services

Findings

• Previous research (literature review)

• Participants

• Use of validated measures (NHP, HADS, SSQ)

• Functions of respite

Literature review

Grey literature:

• Difficult to access (time consuming)

• Frequently qualitative methods

• Majority of items one-off evaluations

Grey Literature

Problematic:

• Information missing (data/info on respondents)

• Low response rates

• Copies of reports incomplete

• Lobbying for services

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

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

Post McNally

• Overall lack of coherence

• 4 UK studies

- lack of definition

- different care groups

- findings inconclusive

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

Participants

Group Carer Cared for Total

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

Caring Relationships

Hu cared for by wife Mo caring for son Partner caring for partner

Hu carer to wife Mo caring for dau Both carers/ both with disabilities

Fa carer to son Mo cared for by dau Frd 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

Outcome measures

Nottingham Health Profile

• Completed by 24/29 ‘cared for’

34/36 carers

• Scores ranged from 2 – 12 for carers

9 – 18 for cared for

(max 35)

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

Outcome measures cont...

SSQ

Completed by 50 interviewees

Aberdeen Strathclyde Lochaber

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)

Respite use

n=48

Residential care 18

Respite in own home 13

Hospital respite 12

Emergency respite 5

Family-based respite 3

Knowledge of respite

%

None 16

A little 45

Didn’t know 10

28% indicated ‘a great deal’

Knowledge of respite cont...

• Knowledge appeared limited to own experience• Narrow range of services• Didn’t 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

Definitions of respite

‘Help around the house or something? I’m not entirely sure.’

Mr. X

‘I didn’t 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

Definitions of respite

‘If my MS got worse from what I understand it’s just like an

assisted living place isn’t it? ..... if you feel sick and cannot

take care of yourself, then you need respite ...’

Mrs. F

Definitions of respite

‘Well I’ve never been down that avenue ... I daresay the

Carers Centre does respite in people’s homes, but they don’t

call it respite ... I can’t remember what they do call it.’

Carer DD

What are respite services?

‘Well, day care I would say that is respite for me. I would say

as the carer it’s respite for me. Also community carer that

mum gets, again is respite for me.’

Carer EE

‘Well actually, I don’t actually (see it as respite) because I

don’t see the personal assistant and I don’t see R’s day

centre as respite. I see it as a bonus.’

Carer Z

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

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

Changing needs

‘But as you get older your respite needs change totally.

You’re not needing out for social activities or R’s social

activities. Its physical health wise every way you need the

respite. It changes over the years.’

Carer FF

Different functions

‘My husband’s 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

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 couldn’t attempt to do that now.’

Carer GG

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 wasn’t at all well and trying to

cope with her. I look back now, I don’t know how I survived.’

Carer QQ

Different functions

‘I think what she’s 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 wouldn’t know when to stop

and I don’t want to do that and I don’t want her to feel that

she’s 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

Partnership working

Promoted by

• Development of project• Advisory Group/Regular meetings• Discussion of research• Joint presentations at meetings

Partnership working

Facilitating factors

• Shared values• Shared aims and objectives• Feeling of joint ownership• Regular contact• Joint presentations

Partnership working

Main challenges

• Geographical distance between partners• Difference in working practices• Changes in staffing• On occasions over expectations of each other

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

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

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