Shared decision-making in the palliative phase with people with intellectual disabilities

Project summary

Involving people with intellectual disabilities in decisions about their palliative care is highly desirable. However, it is complicated and not always obvious. The aim of this project is to promote joint decision-making in the palliative phase of people with intellectual disabilities.

Adapt, implement and evaluate existing tool

An existing collaborative decision-making tool is being adapted for use with people with intellectual disabilities. This is done on the basis of consensus among experts and with the involvement of the target group and relatives. Training is also being developed. The aid is being implemented in 20 residential facilities of 4 care organizations for people with intellectual disabilities. The implementation is evaluated at 128 relatives of participating clients

It is envisaged that the aid and the associated training will be used by care providers and relatives of people with intellectual disabilities in the palliative care phase. The aim is to make palliative care more in line with the preferences of people with intellectual disabilities.