The changing context of respite/short breaks provision in Scotland Give us a Break ! Rosemary Chesson The Robert Gordon University

Social Changes Features of the last decade Changes in health & social care policy Changes in organisational culture Changes in health & social care structures Scientific & technological developments New health/social care legislation

Changes in health care policy care in the community consumerism - The Patients Charter increased emphasis on health promotion/ improvement/public health focus on primary care

Changes in health care structures move to internal markets/GP fund-holding reduction in nos health boards LHCCs Joint Future agenda ? abolition of NHS trusts

Changes in organisational culture occurring in health & social care organisations common across statutory & voluntary sector - emphasis on evidence-based practice - on cost-effectiveness/value for money recognition of importance of evaluation & research

In Scotland 1999 Strategy for Carers in Scotland, The promotion of new and more flexible services for carers including respite care, at a local level 2000SE response to Royal Commission on long term care. - £10 m to carers support in Carers Strategy - provision of equiv. 22,000 wks respite care

Legislative development Community Care & Health Act (2002) free personal care in nursing homes formalised joint working in nursing homes carer assessment in own right direct payment schemes to be provided carers information strategies

Cross-Cutting Agenda Carers Strategy Joint Future Social Inclusion Community Planning Patient Focus & Public Involvement in NHS

Implementation of Policy Survey of Local Authority Social Work Departments in Scotland 31 of 32 Local Authorities responded max of 3 with respite strategy strategic short statements within Community Care Plans/Carers Strategy

Increased interest in respite 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

Making a Break: Developing methods for measuring the impact of respite services Joint Project: Shared Care Scotland and Health Services Research Group

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 Need for research

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 Need for research cont....

The main aims of the study were to: 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 schizophrenia and their carers (e) frail elderly people (excluding those with Alzheimer disease) and their carers Main aims of study

2. identify the most appropriate outcome measures for use with the above groups in the evaluation of respite care. 3. foster partnership working between agencies in voluntary sector and researchers (Community Fund, Health & Social Care Research Programme) Main aims of study cont...

The two main elements: 1. literature review, included critical appraisal of grey literature 2. qualitative study based on Aberdeen City; The Highlands; and former Strathclyde region (South Lanarkshire / Renfrewshire). face to face interviews respite services checklist HADS NHP SSQ Project design

Grey literature: difficult to access (time consuming) frequently one third citations re study groups majority of items one-off evaluations frequently qualitative methods. Findings

problematic - often unreliable information missing (data/info on respondents) low response rates copies of reports incomplete lobbying for services Grey Literature

majority of USA origin mainly focused on chln learn dis. and older people with dementia carer perspective needs related few studies examining effects of respite/use of outcome measures Peer-reviewed literature

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

Table 1: Study participants GroupCarerCared for Total Frail, elderly Multiple Sclerosis Mental health Learning disabilities Chdn. complex needs All men/40 women 17 paired interviews (8 FA, 5 MS, 3 LD, 1 MH) Age range Interview Study

Table 2 Hu cared for by wifeMo caring for sonPartner caring for partner Hu carer to wifeMo caring for dauBoth carers/both with Fa carer to sonMo cared for by daudisabilities Fa carer for dauWfe carer to huFrd help/care for frd (m) Fa cared for by dauWfe cared for by hu Son cared for by fatherDau 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 Caring Relationships

Table 3: Types of Respite n= 48 Residential care 18 Respite in own home13 Hospital respite12 Emergency respite 5 Family-based respite 3 Interview Study

Participants had limited knowledge of respite/short breaks 45%no knowledge 28%a great deal of knowledge 16%a little knowledge 10%didnt know/no opinion BUT 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 Definitions

Participants definitions of respite services did not accord with those of providers 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

Main sources of respite for carers was services for partner/relative Well, day care I would say that is respite for me. I would say as the carer its respite for me. Also the community carer that mum gets, again is respite for me. Carer EE

Respite provided different functions for different people give time for other fam mbs help cared for prepare for future help carer when tired/ill enable carer to cope in crisis

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 Respite provided different functions for different people

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 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 Respite provided different functions for different people

during the course of interviews carers discussed health problems and expressed concerns about their health anxieties expressed re who would provide care if carers health were to breakdown (additional source of anxiety) where high quality respite care was found it was described as enhancing quality of life for both the carer and cared for. Carers health

So the respite element has taken over more of a kind of respite role compared to that 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 day when she was smaller, she would dump herself on the floor and I would lift her up. I couldnt attempt to do that now. Carer GG Carers respite need changed over time

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 Carers respite need changed over time

Promoted by: development of project Advisory Group/Regular meetings discussion of research joint presentations at meetings Challenges: geographical distance differences between organisations over-expectations of each other Partnership working

complexity of evaluating the effects of respite – large numbers of variables to control research evidence can not be used to justify provisions of respite services outcome measure too blunt esp.: - diversity in caring relationships and situations - problems identifying respite care (diffs term.) changing needs problems isolating effects of respite from other service provision and family support systems Main implications

reliable systems needed to capture relevant data respite care needs to be considered in context of carers information strategies value of self-sufficiency places even more demands on family (plus low expectations of respite services) need to address risks to carers health as well as to those they care for Main implications cont...

develop realistic research agenda 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 strategies for connecting individual to resources acknowledge every scenario may be different and change over time Issues