'This battle, between your gut feeling and your mind. Try to find the right balance': Parental experiences of children with spinal muscular atrophy during COVID-19 pandemic.
Irene L B Oude Lansink, P C Carolien van Stam, Eline C W M Schafrat and 7 others
PMID 35445450WHAT IT FOUND
Parents of children with SMA prioritized protecting their child's health, leading them to cancel therapies and isolate the family.
They felt responsible for continuing home exercises and struggled with conflicting advice on returning to school.
Key findings
01The central theme was parents' drive to protect their child's health and well-being, which often meant withdrawing from public life and canceling supportive therapies like physical and occupational therapy.
02Parents took on the responsibility of delivering therapy themselves at home, often using video consultations, because they feared long gaps in treatment would harm their child.
03Parents experienced significant insecurity due to a lack of clear information from healthcare professionals regarding the risks of infection versus the benefits of school and therapy attendance.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study included mostly mothers (16 of 19 participants), so the experiences of fathers may not be fully represented. Parents who were extremely stressed may have declined to participate, potentially biasing the results toward those with more capacity to engage. The findings are specific to the early pandemic period in the Netherlands and may not apply to later variants or different healthcare systems.
Declared interests
The authors declared no conflict of interest.
The easy way to misread this
Do not interpret this study as evidence that canceling therapy is safe or effective. It describes parental fear and behavior during a crisis, not clinical outcomes. The lack of therapy may have had negative effects that were not measured here.