Experiences of families of children with spinal muscular atrophy and the healthcare professionals supporting them during the COVID-19 pandemic: A nationwide study.

purposeThis study aimed to explore how parents and grandparents of children with spinal muscular atrophy (SMA) perceived how the COVID-19 pandemic affected their access to medication and physiotherapy. Further, healthcare professionals' experiences of the care of children with SMA during the pandemic were explored.

methodsThirty-nine parents and three grandmothers of 28 children with SMA answered a web-based survey at two time-points. Telephone follow-ups were conducted with seven of the parents. Parallel focus group interviews were conducted with three interdisciplinary teams of healthcare professionals.

resultsResults showed that 21 family members, 12 children, and nine parents in the study tested positive for COVID-19 during the pandemic. None of the children became seriously ill. All respondents, however, indicated that the pandemic had a significant impact on their everyday life. It made socializing difficult for the children and reduced their access to physiotherapy, hydrotherapy, and personal care attendants. The pandemic also influenced the location of some nusinersen treatments. The professionals reported that, although much of their work continued as usual, they experienced increased stress from their role in nusinersen assessments.

conclusionThese results suggest that it may be valuable to find ways for healthcare professionals to support each other and to support their efforts to help severely ill children and their families now that healthcare systems have opened up again.