changing nature of respite
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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. Changing nature of respite. Shift of emphasis to see benefits for ‘cared for’ as well as carer - PowerPoint PPT PresentationTRANSCRIPT
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