People with Intellectual Disabilities: Promoting Quality End of Life Care

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Background: Internationally concerns have been highlighted about the quality of palliativecare that people with intellectual disability receive. It has also been evidenced that peoplewith intellectual disabilities are seldom referred to hospice and palliative care services.Aim: This study aimed to explore the experience of health and social care professionals inproviding palliative care to people with intellectual disabilities.Methods: An exploratory, qualitative design was used. A purposive sample of thirty health andsocial care professionals, working in intellectual disability and palliative care services, who hadprovided end-of-life care to adults with intellectual disabilities, were recruited to the studyfollowing informed consent. They were asked to reflect on a case scenario of a person withintellectual disability to whom they had provided end of life care. A semi-structured interviewtechnique, developed from the literature with open questions and prompts, was used toexplore their experiences and insights. The narratives from the case scenarios were contentanalysed using a recognised framework.Results: Three themes emerged from the data within the case scenarios: Identifying end oflife care needs, meeting support needs and empowerment in partnership. Examples of goodpractice and issues in practice were apparent.Conclusion / Discussion: This study contributes to the developing international evidencebase to enhance end of life care for people with intellectual disabilities and provides furtherinsights into this area of practice.Funder: HSC Research and Development Doctoral Fellowship Scheme
Original languageEnglish
Pages (from-to)122-122
JournalEuropean Journal of Palliative Care
Publication statusPublished (in print/issue) - May 2015


  • palliative care
  • intellectual disability
  • quality
  • care


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