Continued Involvement: A Scoping Review on Family Members' Needs and Experiences Collaborating With Support Staff for Relatives With Intellectual Disabilities Living Outside the Family Home.
Frances R Vereijken, Noud Frielink, Andrew Jahoda and 1 others
PMID 41424056WHAT IT FOUND
Family members of people with intellectual disabilities living outside the family home wanted clear information, consistent staff, and recognition as partners.
They often felt sidelined when staff changed or communication was poor.
Key findings
01Across the included studies, family members wanted to be kept informed and involved in care decisions for relatives living outside the family home.
02Poor or inconsistent communication left family members feeling sidelined and increased worry about care quality.
03Family members often held back concerns because they feared it would harm their relative's care, and they relied on personal relationships with staff to make collaboration work.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Only ten studies were included, and the review did not exclude or weight studies by quality, so the strength of the evidence varies. Six of the ten included studies involved relatives with severe or profound intellectual disabilities, so the findings may not fit families of people with milder intellectual disabilities. Four studies did not report the level of intellectual disability, and living arrangements were not described clearly in some studies, so comparisons across settings are difficult. Many studies were done within five years after transition, so the review gives limited insight into long-term collaboration. The review focused on family members' experiences, not on support staff's needs or on whether any strategy improves outcomes.
Declared interests
The research was funded by the Dutch Ministry of Health, Welfare and Sport. The authors declared no conflicts of interest.
The easy way to misread this
Do not read this as evidence that a specific family-staff collaboration method improves care. It is a scoping review of experiences and needs, so it maps what families report but does not test whether any approach works.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →