Care and support for persons with profound intellectual and multiple disabilities without parents: A qualitative exploration.
When parents die, adults with profound ID lose their main advocates—start transition talks early.
01Research in Context
What this study did
Kruithof et al. (2022) talked with brothers, sisters, and paid carers. They asked what happens when adults with profound ID lose their parents.
The team used open questions. People shared stories, not numbers.
What they found
No one knew who would take over big choices. Medical, money, and daily-life decisions landed on siblings who felt lost.
Hand-offs happened only after a crisis. Plans were missing.
How this fits with other research
McGeown et al. (2013) saw the same mess earlier. Families of teens with ID said school exit plans came late and confused. Kasper shows the pattern repeats when parents die.
Baker et al. (2025) reviewed 23 studies. Families want to be treated as partners, not visitors. Kasper’s interviews prove that wish is still unmet after parents are gone.
Ee et al. (2022) looked at Singaporean carers of adults with ID plus mental health needs. Both papers show adult siblings stepping in without maps or training.
Why it matters
If you serve adults with profound ID, start a written plan while parents are alive. List who will sign forms, manage funds, and speak with doctors. Review it yearly with siblings and support staff so the next chapter is not an emergency.
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02At a glance
03Original abstract
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.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2022.104334