Journal article
‘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
Abstract
AIMS: Parents of children with spinal muscular atrophy (SMA) often struggle with the all-consuming nature of the demands of caring for a child with substantial physical needs. Our aim was to explore experiences, challenges and needs of parents of a child with SMA in a COVID-19 pandemic situation.
METHOD: Nineteen parents of 21 children (15 months to 13 years of age) with SMA types 1-3 participated in semi-structured interviews in June to July …
Authors
Lansink ILBO; van Stam PCC; Schafrat ECWM; Mocking M; Prins SD; Beelen A; Cuppen I; van der Pol WL; Gorter JW; Ketelaar M
Journal
Child Care Health and Development, Vol. 48, No. 6, pp. 1062–1070
Publisher
Wiley
Publication Date
11 2022
DOI
10.1111/cch.13014
ISSN
0305-1862