Challenges experienced by paid carers providing palliative care to adults with intellectual disabilities
Intended for healthcare professionals
Evidence and practice    

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

Sarah-Jane Boyle @sj_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. 23, 5, 36-45. doi: 10.7748/ldp.2020.e2066

Correspondence

saboyle@tcd.ie

Peer review

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

Conflict of interest

None declared

Permission

To reuse this article or for information about reprints and permissions, please contact permissions@rcni.com

Write for us

For information about writing for RCNi journals, contact writeforus@rcni.com

For author guidelines, go to rcni.com/writeforus

Want to read more?

RCNi-Plus
Already have access? Log in

or

3-month trial offer for £5.25/month

Subscribe today and save 50% on your first three months
RCNi Plus users have full access to the following benefits:
  • Unlimited access to all 10 RCNi Journals
  • RCNi Learning featuring over 175 modules to easily earn CPD time
  • NMC-compliant RCNi Revalidation Portfolio to stay on track with your progress
  • Personalised newsletters tailored to your interests
  • A customisable dashboard with over 200 topics
Subscribe

Alternatively, you can purchase access to this article for the next seven days. Buy now


Are you a student? Our student subscription has content especially for you.
Find out more