End-of-Life Care for People with Intellectual Disabilities: Paid Carer Perspectives

Background: Little is known of paid carers' perspectives when caring for people with intellectual disabilities at the end-of-life. Materials and methods: Sixty four individuals from intellectual disability services took part in 12 focus groups. Interviews were analysed using framework analysis. Results: Participants wanted to provide palliative care and felt the experience enriched practice. However, they were inadequately prepared to meet need and this often led to staff stress. A number of issues appeared to heighten stress: situations when end-of-life care decision making was challenging, when staff felt "pushed out" by relatives and when staff did not have sufficient support or time to provide care or mourn the loss of service users. Conclusions: The study describes issues which contribute to the development of staff stress when providing palliative care and draws attention to areas where strategies should be developed in order to improve the quality of care provided to people with intellectual disabilities.