Family Experiences of Integrated Care for Children With Medical Complexity: A Scoping Review.
Yvonne Zurynski, Karen Hutchinson, Yilin Kang and 2 others
PMID 40329672WHAT IT FOUND
Parents and carers of medically complex children valued having one care coordinator as a single contact, smoother navigation and better communication.
But they also reported fragmented services, unclear coordinator roles and safety concerns about records not being shared.
Key findings
01All seven included paediatric integrated care models used one person as a single point of contact to coordinate care.
02Parents and carers reported smoother navigation of services, improved communication and streamlined pathways through a single point of contact.
03Parents reported that services remained underfunded and fragmented, and that they had limited understanding of care coordinator roles.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
Only seven studies were included, so the findings are a map of limited evidence, not a strong basis for practice. Most included studies reported parents or carers, and only one reported children's own views; of 336 parents in six studies reporting gender/role, 275 were mothers. The models and outcome measures were different across studies, so their relative effectiveness cannot be compared. The review searched only English-language studies from high-income countries and excluded grey literature, so it may miss relevant work and may not transfer to other settings. No protocol was registered or published, and quality scores were not used to exclude studies. Benefits were perceived by parents and carers, not tested child outcomes.
Declared interests
The authors declare no conflicts of interest. Funding was provided by the National Health and Medical Research Council.
The easy way to misread this
Do not read this as proof that integrated care improves child function or reduces costs. The review mapped parent and carer experiences from seven heterogeneous studies, mostly mothers, and did not test outcomes.