Perspectives of people with mild intellectual disabilities on care relationships at the end of life: A group interview study

Abstract

Background: Care relationships are crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on end-of-life care for people with ID have been conducted among caregivers. The views of people with ID about care relationships at the end of life have not been a specific focus of research.

Aim: To explore relevant dimensions of the care relationships in end-of-life care from the perspectives of people with mild ID in the Netherlands.

Design: Group interviews were conducted using nominal group technique. Interviews were inductively analysed by two researchers.

Setting/participants: Seven groups participated (33 people). Inclusion criteria were as follows: having mild ID, being able to decide about participation and give informed consent, and not receiving end-of-life care. All groups were interviewed twice.

Results: Two dimensions of care relationships were found: (1) 'Ascertain, record and honour wishes' of the ill person. Adequately dealing with care wishes, 'last wishes' and funeral wishes was of central importance: 'it's about their life'. We found an emphasis on control that seemed to reflect the participants' experience that respecting autonomy does not always happen. (2) 'Being there': Ill people need people who are there for him or her, practically, as well as emotionally, socially and spiritually. Participants placed specific emphasis on providing positive experiences.

Conclusion: The views of people with mild ID highlight the high demands which end-of-life care imposes on relational qualities of caregivers. This study shows the added value and potential of involving people with ID in studies on end-of-life care.

Keywords: Palliative care; family relations; focus groups; intellectual disability; professional–patient relations.