Publicatie

Publication date

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

Voss, H., Vogel, A., Wagemans, A.M.A., Francke, A.L., Metsemakers, J.F.M., Courtens, A.M.C., Veer, A.J.E. de. What is important for advance care planning in the palliative phase of people with intellectual disabilities? A multi-perspective interview study. Journal of Applied Research in Intellectual Disabilities: 2020, 33(2), 160-171
Download the PDF
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 wereanalysed inductively, using the principles of thematic analysis.

Results
Important themes in ACP were as follows: tailoring care, working as a teamand taking and giving time. The perceived role of people with intellectual disabilitiesin 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.