Experiences of families of children with spinal muscular atrophy and the healthcare professionals supporting them during the COVID-19 pandemic: A nationwide study.
Camilla Udo, Malin Lövgren, Thomas Sejersen and 1 others
PMID 39973581WHAT IT FOUND
Families of children with SMA faced increased isolation and responsibility for home-based therapy.
Healthcare professionals reported ethical stress from prioritising performance assessments over care. While physical health remained stable, the burden shifted heavily to parents and altered the therapeutic relationship.
Key findings
01Parents reported that school, social activities, and hydrotherapy were cancelled, shifting the responsibility for physiotherapy and stretching exercises onto them.
02Healthcare professionals experienced increased stress because their role shifted from providing care to performing yearly assessments that determined whether a child could continue receiving nusinersen treatment.
03Families who relied on personal care attendants faced profound disruptions, with some parents quitting work to become the sole carers due to staff shortages or fear of infection.
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 did not collect data on poverty or other social aspects, limiting the understanding of how socioeconomic factors influenced experiences. The number of single-parent households was too small to draw conclusions about their specific experiences. Telephone interviews were used instead of face-to-face meetings due to pandemic restrictions, which may have resulted in less rich data. The questionnaire was designed for a larger longitudinal study, with pandemic-specific questions added later, which may affect the depth of the original design. No comparison was performed between different groups (e.g., mothers vs. fathers), so differences in experience by role were not systematically analysed.
Declared interests
Funding was provided by several foundations (Anna-Lisa and Bror Björnssons, Freja, Sunnerdals, and Gålö). One author was supported by the Health@InnoHK program from the Government of the Hong Kong Special Administrative Region. The authors declared no potential conflicts of interest.
The easy way to misread this
Do not interpret the lack of severe illness in children with SMA as evidence that the pandemic had minimal impact on this population. The study found significant negative effects on family well-being, increased parental burden for therapy, and ethical distress for healthcare professionals, even though physical health outcomes regarding infection were stable.