'What if I'm no longer around?': An evaluative description of a structured group conversation about the care for persons with profound intellectual and multiple disabilities when they outlive their parents.

Abstract

Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. Family members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it. The group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.