"A very different place from when the pandemic started": Lessons learned for improving systems of care for families of children with medical complexity.
Vanessa C Fong, Jennifer Baumbusch, Koushambhi Basu Khan
PMID 37740509WHAT IT FOUND
Parents of children with medical complexity preferred virtual care for scheduling and rural access but found it ineffective for therapies requiring physical engagement.
They urgently requested flexible funding for respite and exceptions to hospital visitor policies to support caregiving demands.
Key findings
01Virtual appointments were preferred for convenience and travel savings, especially in rural areas, but were unsuitable for therapies requiring physical interaction or engagement, such as speech therapy for a deaf-blind child.
02Hospital policies restricting visitors to one parent caused severe physical and emotional strain, particularly when caring for heavier children or during long admissions, preventing parents from resting.
03Parents valued flexible government funding for respite that allowed purchasing essentials like food or housekeeping, viewing this as more practical than traditional in-home respite services.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPsWhat it means for RNs
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What it does not show
The sample was small (16 participants) and homogeneous, consisting mostly of white, English-speaking women, limiting the transferability of findings to men, gender-diverse individuals, and families speaking other languages. The study was cross-sectional, so it could not capture how service needs and experiences fluctuated over time. Findings are specific to the British Columbia healthcare context and may not apply to other regions or healthcare systems.
Declared interests
The authors declared no potential conflicts of interest. The work was supported by The Canadian Institutes of Health Research.
The easy way to misread this
Do not interpret these findings as evidence that virtual care is universally inferior or superior for children with medical complexity. The study highlights that appropriateness depends on the specific therapy type and the child's sensory or physical needs, with parents requesting choice rather than a single model.