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

Bekkema, N., Veer, A.J.E. de, Hertogh, C.M.P.M., Francke, A.L. Perspectives of people with mild intellectual disabilities on care relationships at the end of life: a group interview study. Palliative Medicine: 2016, 30(7), 625-633
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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. (aut. ref.)