What is important for advance care planning in the palliative phase of people with intellectual disabilities? A multi-perspective interview study

Hille Voss*, Anique Vogel, Annemieke M. A. Wagemans, Anneke L. Francke, Job F. M. Metsemakers, Annemie M. Courtens, Anke J. E. de Veer

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

4 Citations (Web of Science)

Abstract

Background Advance care planning (ACP) is the process of discussing and documenting wishes and preferences for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is important for ACP in the palliative phase of people with intellectual disabilities. Method In-depth interviews were conducted with people with intellectual disabilities (n = 5), relatives (n = 7) and professional caregivers (n = 8). Qualitative data were analysed inductively, using the principles of thematic analysis. Results Important themes in ACP were as follows: tailoring care, working as a team and taking and giving time. The perceived role of people with intellectual disabilities in ACP was to express their wishes. Relatives had a signalling, representing and contributing role. Professionals felt their role was to inform, collaborate and coordinate. Conclusions A staff training programme about ACP should cover how to build and maintain close relationships, provide a safe environment and address ACP as an integral part of care.

Original languageEnglish
Pages (from-to)160-171
Number of pages12
JournalJournal of Applied Research in Intellectual Disabilities
Volume33
Issue number2
Early online date23 Aug 2019
DOIs
Publication statusPublished - Mar 2020

Keywords

  • ADULTS
  • COMMUNITY LIVING STAFF
  • DEATH
  • END
  • EXPERIENCES
  • IMPLEMENTATION
  • KNOWLEDGE
  • OF-LIFE DECISIONS
  • OLDER-PEOPLE
  • SERVICES
  • advance care planning
  • decision-making
  • end of life
  • intellectual disability
  • palliative care
  • staff training
  • CHALLENGES

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