Learning Disability Today
Supporting professionals working in learning disability and autism services

Study explores care of people with a learning disability when they outlive their parents

When a person with profound intellectual and multiple disabilities (PIMD) loses their parents, 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 absent parents.

The research published in Research in Development Disabilities aimed to explore how parental roles are taken over by others and how this affects the care and support as well as quality of life of the person.

Researchers 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.

It found that 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.

Due to growing life expectancy, more persons with PIMD are increasingly outliving their parents, which means that someone else than the parent needs to take on the role of legal guardian. Parents often fear their absence may result in worse care and support for their child with PIMD and consequentially a diminished quality of life.

Impact on siblings

The researchers found that some siblings reported that they and their parents had discussed the future care and support, including legal guardianship, for their family member with PIMD long before their parents were dying. Other siblings stated that they had not spoken about taking over certain roles from their parents until the last moment.

Several siblings mentioned that because the transfer of care and support was a “difficult topic” for their parents, they had not thoroughly discussed this with their parents. Because of this lack in communication, siblings reported they had to find out most things on their own, through trial and error.

Siblings, as legal guardians, had to make medical decisions on behalf of their sibling with PIMD. Several mentioned how life-prolonging interventions may not be in the interest of their sibling with PIMD, and most had drawn up no-resuscitation plans for them. Still, they reported to struggle with their responsibility of making such life and death decisions for their sibling with PIMD who could not communicate her/his situation clearly.

Impact on professional caregivers

Professional caregivers underscored the necessity to start communication about the future timely to prevent loss of knowledge about the person with PIMD.

This made them feel increasingly responsible for their clients without involved family, which was also reflected in the more central role they took on in relation to medical decision-making for clients with less involved legal guardians.

Contrastingly, professional legal guardians did not believe it was their place to make medical decisions for their clients, and expected professional caregivers and treating physicians to take the lead in such decisions. They felt mostly responsible to perform their duties as required by law, and did not think the quality of life of their clients was negatively impacted by the absence of parents.

The researchers said: “While the amount of persons with PIMD without parents is relatively small, it is expected that their numbers will increase in the near future.

“Persons with PIMD need someone speaking up for their interests, including their medical interests. If parents are no longer around to do this, siblings and professionals should be supported in taking on this responsibility. Support aimed at facilitating a timely transition of responsibilities, as well as regarding the content of these responsibilities, could contribute to siblings and professionals being and/or feeling more equipped to fulfil these responsibilities, and in forming together a network of support for this utmost vulnerable group.”

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