Family Carer Perspectives on Palliative CareEducation and Service Provision for People withLearning Disability

The international literature highlights concerns regardingthe palliative care that people with learning disabilities areoften offered (Michael, 2008; Wageman et al, 2010). Thereare also limited referrals of people with learning disabilitiesto hospice services (Stein, 2008; Ryan et al, 2010). Yetpalliative care services need to be tailored for thispopulation, and their family carers.Aim: The aim of this doctoral study was to develop a multimediaresource, to enable professionals to provide palliativecare to people with learning disabilities and their familycarers.Design: A sequential, exploratory mixed methods designwas used. In Phase 1 a purposive sample of five family carersof people with learning disabilities were recruited to semistructuredinterviews. Data were thematically analysed(Newell and Burnard, 2006) and findings reflected holisticcare aligned with the National Gold Standard Framework forEnd-of-Life Care (GSF). This informed a proforma in Phase 2-aregional scoping study of end-of-life service provision topeople with learning disabilities within sixty-six services.Descriptive statistics were used.Results: Four themes emerged from the interviews:‘resilience in caring’, ‘information and preparation’, ‘coordinatingcare’ and ‘learning needs of professionals’. Aresponse rate of 71.2% (n=47) was obtained from thescoping study which provided evidence of services’response to family carers of people with learning disabilitiesneeding end-of-life care. A multi-media resource using arobust service user perspective, including that of a familycarer, was developed.Conclusions: The long term caring role of family carers ofpeople with learning disabilities enables expertise to informprofessional education and practice in palliative care.Findings suggest professionals should recognise this longterm role and work in partnership with family carers inaddressing the needs of people with learning disabilities atend-of-life.Funder: HSC R&D Division