‘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

Parents’ perspectives on nusinersen treatment for children with spinal muscular atrophy

(2021) Mette Kruijsbergen et al.   DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY

Natural history of lung function in spinal muscular atrophy

(2020) Camiel A. Wijngaarde et al.   Orphanet Journal of Rare Diseases

Informal home care providers: the forgotten health-care workers during the COVID-19 pandemic

(2020) Emily Ying Yang Chan et al.   LANCET

Knowledge Empowers: Responding to the Knowledge Needs of Youth with Disabilities and Families during the Pandemic

(2020) Annette Majnemer et al.   PHYSICAL & OCCUPATIONAL THERAPY IN PEDIATRICS

COVID‐19 and children with cancer: Parents’ experiences, anxieties and support needs

(2020) Anne‐Sophie E. Darlington et al.   PEDIATRIC BLOOD & CANCER

Understanding the experiences and needs of individuals with Spinal Muscular Atrophy and their parents: a qualitative study

(2015) Ying Qian et al.   BMC Neurology

‘A short time but a lovely little short time’: Bereaved parents' experiences of having a child with spinal muscular atrophy type 1

(2015) Emily J Higgs et al.   JOURNAL OF PAEDIATRICS AND CHILD HEALTH

Standards for Reporting Qualitative Research

(2014) Bridget C. O’Brien et al.   ACADEMIC MEDICINE