Challenges experienced by paid carers providing palliative care to adults with intellectual disabilities
evidence and practice    

Challenges experienced by paid carers providing palliative care to adults with intellectual disabilities

Sarah-Jane Boyle Staff Nurse, Stewarts Care Ltd, Dublin, Ireland
Carmel Doyle Assistant Professor, University of Dublin Trinity College, Dublin, Ireland

Why you should read this article:
  • To acknowledge that there is a growing number of adults with intellectual disabilities who need palliative care

  • To understand the challenges faced by professional carers providing palliative care to people with intellectual disabilities

  • To gain awareness of the importance of collaboration between palliative care and intellectual disability professionals

This article presents a literature review that was undertaken to explore the challenges experienced by paid carers when providing palliative care to adults with intellectual disabilities. The outcomes show that providing palliative care to people with intellectual disabilities is fraught with difficulties. Professionals, whether they work in palliative care services or in intellectual disability services, face an array of challenges that limit their ability to provide high-quality care. These challenges include limited experience, difficulties in identifying and managing symptoms, such as pain and distress – partly because of diagnostic overshadowing – and suboptimal coordination of care, collaboration between services and communication with patients. This article outlines some recommendations arising from the literature that may improve the provision of palliative care for people with intellectual disabilities.

Learning Disability Practice. doi: 10.7748/ldp.2020.e2066

Peer review

This article has been subject to external double-blind peer review and has been checked for plagiarism using automated software

@sj_boyle

Correspondence

saboyle@tcd.ie

Conflict of interest

None declared

Boyle S, Doyle C (2020) Challenges experienced by paid carers providing palliative care to adults with intellectual disabilities. Learning Disability Practice. doi: 10.7748/ldp.2020.e2066

Published online: 18 June 2020

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