Qualitative feedback from caregivers in a multidisciplinary pediatric neuromuscular clinic.
Skylar M Hess, Dorothy Adu-Amankwah, Cordelia R Elaiho and 6 others
PMID 38427510WHAT IT FOUND
Twenty-two caregivers valued seeing an average of six providers in one visit and clear next steps, but found the long, back-to-back clinic environment overwhelming.
Key findings
0177% of caregivers said the convenience of seeing providers in one setting was the most helpful aspect.
02All 22 caregivers reported that every provider communicated the next steps in the patient's care.
0323% of caregivers described the clinic as overwhelming, and 32% commented on the physical environment, with only 11% of those comments positive.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The study was done in one urban tertiary academic center, so the clinic model may not transfer to other settings. Only 22 caregivers were interviewed, and participation was limited to English- and Spanish-speaking families; 15% of clinic families spoke neither language. Interviews occurred at the end of clinic visits and only with caregivers who had time then, so the sample was not all eligible families. The study reports caregiver experiences and themes, not measured clinical outcomes, so it cannot show that the clinic improves health, function, or caregiver burden.
The easy way to misread this
Do not read this as proof that multidisciplinary clinics improve children's health or reduce caregiver burden. It describes 22 caregivers' experiences in one clinic and reports no clinical outcomes.