The needs of family members of people with severe or profound intellectual disabilities when collaborating with healthcare professionals: a systematic review.
Treat families as co-therapists, not baggage, and care plans stick.
01Research in Context
What this study did
Baker et al. (2025) looked at 23 studies about what families need when they work with doctors and nurses for relatives with severe or profound intellectual disability.
They pulled out five big themes that keep showing up. The review covers any paper that asked families what helps or hurts teamwork with health staff.
What they found
Families want to be treated like experts on their person, not just visitors. They need clear talk, real involvement in choices, and staff who respect them.
The five themes are: being seen, being heard, shared power, kind staff traits, and smooth hand-offs between services.
How this fits with other research
Heald et al. (2020) found the same gate-keeper role in sexual-health care for women with ID. Both reviews say families steer care when staff skip training.
Adams et al. (2021) show mothers of people with ID have higher depression and stress. Baker et al. (2025) explain why: they fight to be heard in every visit.
Smith et al. (1997) warned that GPs feel lost without ID training. The new review keeps that barrier alive, but adds the fix: treat families as partners, not problems.
Why it matters
You can boost family buy-in by starting each meeting with, "What do you notice that I should know?" Write their answer in the plan. Offer choices, not orders. When families feel like crew members, missed appointments drop and home carry-over jumps.
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02At a glance
03Original abstract
BACKGROUND: Collaboration with healthcare professionals is crucial in arranging necessary lifelong support for people with intellectual disabilities. However, family members often face challenges when collaborating with healthcare professionals. Family members of people with severe and profound intellectual disabilities often encounter many professionals due to medical needs and the severity of their disability. Therefore, providing a comprehensive overview of existing literature on the needs and experiences of family members of relatives with severe or profound intellectual disabilities when collaborating with healthcare professionals is needed to provide insight into how to stimulate and support collaboration. METHOD: The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Seven databases were systematically searched and a thematic analysis was conducted on 23 studies. RESULTS: Five overarching themes were identified: (1) need for a balanced view of their relative; (2) need for recognition and compassion; (3) healthcare professionals facilitating close and active involvement; (4) desired qualities of healthcare professionals and (5) conditions for successful interaction between family members and healthcare professionals. CONCLUSIONS: The results indicated distinct needs that family members had for themselves and their relatives, as well as desired qualities (e.g. trustworthiness) and supporting factors (e.g. information). Furthermore, the review highlighted persisting needs, such as the need for information and empathy, as well as emerging needs, such as the desire to be recognised as experts and to develop personal bonds with healthcare professionals. These insights can inform future research by identifying areas that require deeper exploration.
Journal of intellectual disability research : JIDR, 2025 · doi:10.1111/jir.13199