Development, Implementation, and Evaluation of an Advance Care Planning Program for Professionals in Palliative Care of People With Intellectual Disability

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

doi:10.1352/1934-9556-59.1.39

Development, Implementation, and Evaluation of an Advance Care Planning Program for Professionals in Palliative Care of People With Intellectual Disability

Intellect Dev Disabil. 2021 Feb 1;59(1):39-54. doi: 10.1352/1934-9556-59.1.39.

Authors

Hille Voss¹, Anique G F M Vogel², Annemieke M A Wagemans³, Anneke L Francke⁴, Job F M Metsemakers⁵, Annemie M Courtens⁶, Anke J E de Veer⁷

Affiliations

¹ Hille Voss*, Netherlands Institute of Health Services Research (Nivel), Utrecht, the Netherlands.
² Anique G.F.M. Vogel*, Maasveld, Koraal, Maastricht, the Netherlands.
³ Annemieke M.A. Wagemans, Maasveld, Koraal, Maastricht, the Netherlands; Expertise Centre for Palliative Care, Maastricht University Medical Centre, Maastricht, the Netherlands; and Department of Family Medicine, Faculty of Health, Medicine and Life Science, Maastricht University, the Netherlands.
⁴ Anneke L. Francke, Netherlands Institute of Health Services Research (Nivel), Utrecht, the Netherlands; Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health; Expertise Centre for Palliative Care, Amsterdam, the Netherlands.
⁵ Job F.M. Metsemakers, Department of Family Medicine, Faculty of Health, Medicine and Life Science, Maastricht University, the Netherlands.
⁶ Annemie M. Courtens, Expertise Centre for Palliative Care, Maastricht University Medical Centre, Maastricht, the Netherlands.
⁷ Anke J.E. de Veer, Netherlands Institute of Health Services Research (Nivel), Utrecht, the Netherlands.

PMID: 33543280
DOI: 10.1352/1934-9556-59.1.39

Abstract

In this article we describe how an advance care planning (ACP) program was developed, implemented, and evaluated. Our aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on 10 competencies needed for ACP and was developed in a co-design process with people with ID, relatives, and professionals. The program was implemented in six ID care organizations in the Netherlands and consisted of an information pack, a training course, and an implementation interview about implementing ACP. Professionals indicated that their competencies had improved, particularly regarding communication and the application of ACP as a standard element in palliative care practice. This program therefore seems helpful in training ID care professionals in the competencies needed for ACP.

Keywords: advance care planning; end of life; intellectual disability; palliative care.

©AAIDD.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Advance Care Planning*
Communication
Humans
Intellectual Disability* / therapy
Palliative Care