Background and aim: Little is known regarding how families including a child with spinal muscular atrophy (SMA) have experienced life during the coronavirus disease 2019 (COVID-19) pandemic. In this study, we explored how parents and grandparents of a child with SMA feel the COVID-19 pandemic has affected their lives, particularly as regards medication and rehabilitation of the child.
Methods: Thirty-nine parents (24 mothers, 15 fathers), and 3 grandmothers, of 28 children with SMA, answered a web-based survey with closed- and open-ended questions. In addition, telephone follow-ups were conducted with seven of the parents.
Results: The daily life of parents and grandmothers of children with SMA has been affected by the pandemic. The most prominent change related to social life and the children’s access to care, e.g., physiotherapy, and personal assistance, which has impacted on the way of life for entire families. The pandemic has also had some impact on where the children receive nusinersen treatment. Few family members reported having tested positive for COVID-19. None reported that their child with SMA had been severely ill in COVID-19.
Conclusions: Given these results, it may be valuable to reach out to families of severely ill children when societies and healthcare systems open up, to find out how they have coped with the consequences of the COVID-19 pandemic and offer further support if needed.