The changing context of respite/short breaks provision in Scotland

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Give us a Break !. The changing context of respite/short breaks provision in Scotland. Rosemary Chesson The Robert Gordon University. Features of the last decade. Changes in health & social care policy. Social Changes. Changes in organisational culture. New health/social - PowerPoint PPT Presentation

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<ul><li><p>The changing context of respite/short breaks provision in ScotlandGive us a Break !Rosemary ChessonThe Robert Gordon University</p></li><li><p>Social ChangesFeatures of the last decadeChanges in health &amp;social care policyChanges inorganisationalcultureChanges in health&amp; social carestructuresScientific &amp;technologicaldevelopmentsNew health/socialcare legislation </p></li><li><p>Changes in health care policy</p><p>care in the community </p><p> consumerism - The Patients Charter</p><p>increased emphasis on health promotion/ improvement/public health</p><p>focus on primary care </p></li><li><p>Changes in health care structuresmove to internal markets/GP fund-holding</p><p>reduction in nos health boards</p><p>LHCCs</p><p>Joint Future agenda</p><p>? abolition of NHS trusts </p></li><li><p>Changes in organisational cultureoccurring in health &amp; social care organisations</p><p>common across statutory &amp; voluntary sector</p><p>- emphasis on evidence-based practice- on cost-effectiveness/value for money</p><p> recognition of importance of evaluation &amp; research </p></li><li><p>In Scotland1999 Strategy for Carers in Scotland, The promotion of new and more flexible services for carers including respite care, at a local level</p><p>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</p></li><li><p>Legislative development</p><p>Community Care &amp; Health Act (2002)</p><p>free personal care in nursing homesformalised joint working in nursing homescarer assessment in own rightdirect payment schemes to be providedcarers information strategies</p></li><li><p>Cross-Cutting Agenda</p><p>Carers StrategyJoint FutureSocial InclusionCommunity PlanningPatient Focus &amp; Public Involvement in NHS</p></li><li><p>Implementation of Policy</p><p>Survey of Local Authority Social Work Departments in Scotland</p><p>31 of 32 Local Authorities respondedmax of 3 with respite strategystrategic short statements within Community Care Plans/Carers Strategy</p></li><li><p>Increased interest in respite</p><p>Respite projects within Health Services Research GroupStrategic Development Respite Proposal for Aberdeen City Council 1999Respite: Definitions and Policy Project for MS Society 2000Review of MS Society Holiday Homes in Scotland (for MS Society) 2001Advise on Respite Directory for MS Society 2002</p></li><li><p>Making a Break: Developing methods for measuring the impact of respite services</p><p>Joint Project: Shared Care Scotland andHealth Services Research Group</p></li><li><p> 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 infoNeed for research</p></li><li><p>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</p><p> NHS Trust ManagerNeed for research cont....</p></li><li><p>The main aims of the study were to:</p><p>1. investigate the role of respite care for: </p><p>(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</p><p>Main aims of study</p></li><li><p>2. identify the most appropriate outcome measures for use with the above groups in the evaluation of respite care. </p><p>3. foster partnership working between agencies in voluntary sector and researchers (Community Fund, Health &amp; Social Care Research Programme)</p><p>Main aims of study cont...</p></li><li><p>The two main elements:</p><p>1. literature review, included critical appraisal of grey literature</p><p>2. qualitative study based on Aberdeen City; The Highlands; and former Strathclyde region (South Lanarkshire / Renfrewshire).</p><p> face to face interviews respite services checklist HADS NHP SSQProject design</p></li><li><p>Grey literature:</p><p>difficult to access (time consuming)</p><p>frequently one third citations re study groups</p><p>majority of items one-off evaluations</p><p>frequently qualitative methods.</p><p>Findings</p></li><li><p> problematic - often unreliable</p><p> information missing (data/info on respondents)</p><p> low response rates</p><p> copies of reports incomplete</p><p> lobbying for servicesGrey Literature</p></li><li><p> majority of USA origin</p><p> mainly focused on chln learn dis. and older people with dementia</p><p> carer perspective</p><p> needs related</p><p> few studies examining effects of respite/use of outcome measuresPeer-reviewed literature</p></li><li><p>Not possible to do meta-analysis </p><p>because of the great diversity in study design types of intervention, settings of intervention and variety of outcomemeasures</p><p>McNally et al, 1999Effectiveness of Respite</p></li><li><p>Table 1: Study participants</p><p>GroupCarerCared for TotalFrail, elderly 11 9 20Multiple Sclerosis 5 11 16Mental health 2 1 3Learning disabilities 10 3 13Chdn. complex needs 8 - 8All 36 24 60</p><p>20 men/40 women17 paired interviews (8 FA, 5 MS, 3 LD, 1 MH)Age range 30-92</p><p>Interview Study</p></li><li><p>Table 2 Hu cared for by wifeMo caring for sonPartner caring for partnerHu carer to wifeMo caring for dauBoth carers/both with Fa carer to sonMo cared for by daudisabilitiesFa carer for dauWfe carer to huFrd help/care for frd (m)Fa cared for by dauWfe cared for by huSon cared for by fatherDau cared for by moDau cares for moDau cares for faSr caring for broMo-in-law cared for by dau-in-lawDau-in-law cares for mo-in-lawCaring Relationships</p></li><li><p> Table 3: Types of Respite n=48Residential care 18Respite in own home13Hospital respite12Emergency respite 5Family-based respite 3</p><p>Interview Study</p></li><li><p> 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</p><p>BUT</p><p> 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</p><p>Definitions</p></li><li><p>Participants definitions of respite services did not accord with those of providers</p><p>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 ....</p><p>Mrs. F</p></li><li><p>Main sources of respite for carers was services for partner/relative</p><p>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.</p><p>Carer EE</p></li><li><p>Respite provided different functions for different people</p><p> give time for other fam mbs help cared for prepare for future help carer when tired/ill enable carer to cope in crisis</p></li><li><p>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</p><p>Respite provided different functions for different people</p></li><li><p>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</p><p>Respite provided different functions for different people</p></li><li><p> during the course of interviews carers discussed health problems and expressed concerns about their health</p><p> anxieties expressed re who would provide care if carers health were to breakdown (additional source of anxiety)</p><p> where high quality respite care was found it was described as enhancing quality of life for both the carer and cared for.</p><p>Carers health</p></li><li><p>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</p><p>Carers respite need changed over time</p></li><li><p>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</p><p>Carers respite need changed over time</p></li><li><p>Promoted by:</p><p> development of project Advisory Group/Regular meetings discussion of research joint presentations at meetings</p><p>Challenges:</p><p> geographical distance differences between organisations over-expectations of each other</p><p>Partnership working</p></li><li><p> complexity of evaluating the effects of respite large numbers of variables to control</p><p> research evidence can not be used to justify provisions of respite services</p><p> outcome measure too blunt esp.: - diversity in caring relationships and situations - problems identifying respite care (diffs term.)</p><p> changing needs</p><p> problems isolating effects of respite from other service provision and family support systems</p><p>Main implications</p></li><li><p> reliable systems needed to capture relevant data</p><p> respite care needs to be considered in context of carers information strategies</p><p> value of self-sufficiency places even more demands on family (plus low expectations of respite services)</p><p> need to address risks to carers health as well as to those they care forMain implications cont...</p></li><li><p> develop realistic research agenda</p><p> caution regarding evidence-based agenda (policy makers/ managers)</p><p> reconcile right to privacy/consent to research and need for research</p><p> distinguish core respite from by-products of other services</p><p> strategies for connecting individual to resources</p><p> acknowledge every scenario may be different and change over timeIssues</p></li></ul>

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