‘From activating towards caring’: shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives care-staff and physicians

摘要

BackgroundProfessionals and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This is a specific type of care that may require a different approach to the focus on participation that currently characterizes the care for people with ID.This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with ID approaches, as well as the values underlying these shifts.