Care and Support for Persons with Profound Intellectual and Multiple Disabilities without Parents: A Qualitative Exploration

Background: Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known about the actual situation of persons with PIMD without parents.

Aim: To explore how parental roles are taken over by others, when persons with PIMD have outlived their parents, and how this affects the care and support for and quality of life (QoL) of persons with PIMD.

Methods: We interviewed seven siblings, and six professionals (N = 13) involved in the care and support for persons with PIMD without parents, and analysed the data thematically.

Results: Siblings described a lack in family communication about the transition, yet felt responsible to fill the gap their parents left behind. Professional legal guardians felt professional responsibility towards their clients, yet described they had a limited assignment to fulfil. Professional caregivers underscored the importance of family in the care and support for persons with PIMD, while describing sometimes taking on extra responsibility for clients without parents.

Conclusions: Support aimed at facilitating a timely transfer of responsibilities, and at clarifying the content of these responsibilities, could better prepare both siblings and professionals to mitigate the impact of the loss of parents for persons with PIMD.