Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives Evidence fromEuropean and American studies indicates limitedreferrals of people with learning (intellectual)disabilities to palliative care services. Althoughprofessionals’ perceptions of their training needs inthis area have been studied, the perceptions ofpeople with learning disabilities and family carersare not known. This study aimed to elicit the viewsof people with learning disabilities, and their familycarers concerning palliative care, to informhealthcare professional education and training.Methods A qualitative, exploratory design wasused. A total of 17 people with learning disabilitieswere recruited to two focus groups which tookplace within an advocacy network. Additionally,three family carers of someone with a learningdisability, requiring palliative care, and two familycarers who had been bereaved recently were alsointerviewed.Results Combined data identified the perceivedlearning needs for healthcare professionals.Three subthemes emerged: ‘information andpreparation’, ‘provision of care’ and ‘family-centredcare’.Conclusions This study shows that people withlearning disabilities can have conversations aboutdeath and dying, and their preferred end-of-lifecare, but require information that they canunderstand. They also need to have people aroundfamiliar to them and with them. Healthcareprofessionals require skills and knowledge toeffectively provide palliative care for people withlearning disabilities and should also work inpartnership with their family carers who haveexpertise from their long-term caring role. Thesefindings have implications for educators andclinicians.