Title: Respite care and short breaks for young adults with complex healthcare needs due to a lifelimiting condition and/or complex physical disability: Mixed-method systematic review and conceptual framework development
Funder: Department of Health and Social Care

Abstract: The population of young people with life-limiting/complex health and/or complex physical disability needs (LLDNs) who survive into adulthood has increased by 45-50% over the last decade [66,1] placing an increasing burden on care services. Respite care and short breaks are an essential component of palliative care for young adults with LLDNs but provision following transition from child to adult services is described by parents as ‘like falling off a cliff’. Poor continuity of care has a significant impact on the health and well-being of families and carers and may shorten lives. Commissioners and service providers have a statutory duty to provide integrated services but require systematic characterisation and evaluation of current services to inform future service planning. AIM To undertake an integrative systematic review to identify, characterise and evaluate the provision of respite care for young adults with life limiting/complex health and/or complex physical disability needs aged 18-40 years. METHODS A mixed methods review comprising four evidence streams, an overarching synthesis, a conceptual framework and recommendations for further research to inform service development. Stream 1- evaluate the effectiveness of respite care for improving well-being; Stream 2- evaluate the costs of care; Stream 3- explore stakeholder experiences to identify themes, facilitators and barriers; Stream 4- collate and evaluate policy and guidelines. The protocol will be based on PRISMA and EMERGE guidelines and registered on the PROSPERO database. We will include all studies on respite care for young people with life limiting/complex health and/or complex physical disability needs, tailored to each evidence stream. We will search CINAHL, MEDLINE, EMBASE, PsycINFO, ASSIA, HMIC, PROSPERO, TRIP, COnNECT+, British Nursing Index, Web of Science, Social Care Online, NIHR Journals Library, Cochrane Effective Practice and Organisation of Care specialist register, databases on the Cochrane Library, international clinical trials registers and a range of grey literature for eligible studies. We will develop a sensitive and specific search strategy, with appropriate filters, for Medline and adapt it for other sources. We will evaluate study quality using Cochrane Risk of Bias, ROBINS-I, CHEERS, CASP, MMAT, AGREE II and AACODS tools as appropriate. Using bespoke data extraction tools for each stream we will extract: publication characteristics, study aims, hypotheses, participant characteristics, types of respite care for all included studies and other study characteristics relevant to each stream. We will extract quantitative and qualitative study results focusing on the following main outcomes for each stream: S1 quality of life, well-being, health impact, stress and coping, family cohesion, satisfaction with care; S2 evaluation of cost; S3 themes, concepts, barriers, facilitators; S4 recommendations, directives, actions. Data will be analysed using relevant meta-analytic and meta-synthesis techniques according to data requirements. Overall quality of the evidence will be rated using relevant GRADE tools. OUTPUTS Key findings will inform development of a conceptual framework highlighting evidence gaps, barriers and facilitators to the effective delivery of respite care. The knowledge map and framework will inform the development of recommendations for further empirical research to inform service development and evaluation.

Lay abstract: Research estimated that there were 55,721 young adults living with life-limiting conditions and 100,000 disabled young people in England about ten years ago. The population of young adults (aged 18-40) living with life-limiting health and/or complex physical disability needs (LLDNs) has increased by 45-50% over the last decade due to improvements in the medical care available leading to large numbers of people now moving into adult services. Young adults with LLDNs need high levels of complex care, which is normally provided by their parents or carers with support from health and social care professionals. This daily care can be demanding physically, mentally and emotionally and result in parents experiencing high levels of stress and burden. Before turning 18 years of age young people with LLDNs can access respite care and short breaks through children’s hospices and other specially designed children’s services. Respite care has been shown to help reduce parent stress and breakdown as well as unplanned hospital admissions and social care interventions for the young people with LLDNs. As these young people reach adulthood they, and their families, are often no longer eligible to access respite care from children’s hospices and children’s services. Currently there is no standard model of respite care to replace the care previously received from children’s hospices and children’s services, and there are major geographical and service differences in how current respite care for young adults is delivered. Leading respite care providers and charities from within the UK, such as Together for Short Lives, have identified an urgent need for a review of current evidence and policy to find the extent of the problem and the gaps in the evidence. We will ensure our review is of direct relevance to health and social care services by working closely with our clinical colleagues, charity partners, expert steering committee and a patient and public advisory group of young adults and parents/carers. This review will gather and summarise research literature from across the globe and UK policy using recognised and thorough systematic review methods. The review will examine the literature regarding the type of services available and the experience of young adults aged over 18 years of age with life limiting conditions, focusing on young adults and parent/carers’ perspectives, cost-effectiveness, things which work well and also the barriers to respite care provision. From this we will make recommendations for further research to inform policy and how services are delivered. The review team has well established methods of dissemination to ensure that any important issues the review highlights will reach key national charities, patient and public groups, policy makers and clinical and academic colleagues.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE