'I Call Them Our Village': Experiences Of Caregivers in Ontario's Extensive Needs Service.
Victoria Rombos, Zainab O Salami, Nicholas Denomey and 10 others
PMID 42722993WHAT IT FOUND
Caregivers valued the wraparound service for reducing their burden of coordinating care and for clinicians who listened.
They feared discharge because they had previously struggled to access support. The study reports their experiences, not whether the programme improved clinical outcomes.
Key findings
01Participants described how open communication between the team reduced the burden of care coordination that they previously had to assume.
02Many participants worried about being discharged from the programme as they grew more comfortable participating in it.
03Caregivers reported that seemingly small changes, such as their child expressing their needs, could substantially increase their quality of life.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study included only caregivers whose children had been in the programme for at least six months, potentially excluding those who dropped out earlier or had negative experiences. Participants may have been more inclined to take part if they had positive experiences, which could skew the findings toward satisfaction. The service was delivered in urban centres, so findings may not apply to rural or remote settings. The study reports subjective experiences and does not measure clinical outcomes or efficacy.
Declared interests
The authors declared that financial support was received for the work or its publication. The research team included managers of the ENS programme, and one author is a developmental paediatrician who refers clients to the ENS.
The easy way to misread this
Do not interpret the caregivers' satisfaction and reported improvements as evidence that the Extensive Needs Service is clinically effective. This is a qualitative study of experience, not a trial of outcomes. The positive feedback may also be influenced by selection bias, as caregivers with positive experiences were more likely to participate.