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What is important for advance care planning in the palliative phase of people with intellectual disabilities? A multi‐perspective interview study
Author(s) -
Voss Hille,
Vogel Anique,
Wagemans Annemieke M. A.,
Francke Anneke L.,
Metsemakers Job F. M.,
Courtens Annemie M.,
Veer Anke J. E.
Publication year - 2020
Publication title -
journal of applied research in intellectual disabilities
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.056
H-Index - 63
eISSN - 1468-3148
pISSN - 1360-2322
DOI - 10.1111/jar.12653
Subject(s) - intellectual disability , thematic analysis , perspective (graphical) , advance care planning , palliative care , psychology , qualitative research , inclusion (mineral) , nursing , process (computing) , medical education , medicine , social psychology , sociology , psychiatry , artificial intelligence , computer science , social science , operating system
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.