People with intellectual disabilities: promoting quality end of life care

D. McLaughlin, O. Barr, S. McIlfatrick, R. McConkey

Research output: Contribution to conferenceAbstractpeer-review


Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme
Original languageEnglish
Publication statusPublished - 10 May 2015
EventEAPC 2015- 14th World Congress of the European Association for Palliative Care - Copenhagen, Denmark
Duration: 08 May 201510 May 2015


ConferenceEAPC 2015- 14th World Congress of the European Association for Palliative Care

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