Insights From Wise Warriors: A Needs Assessment and Preventive Parenting Program Recommendations From Parents of Children With Spinal Muscular Atrophy

Abstract

Spinal muscular atrophy (SMA) is a neuromuscular disease that significantly affects children's motor function, including the ability to breathe and swallow, and was the leading genetic cause of infant death until 2016. SMA affects not only children but entire families. SMA parents experience overall poorer mental health compared with parents of children without disabilities, impacting caregiving. However, their experiences and needs remain understudied. This study aimed to identify parent needs and recommendations for a parenting program. Semistructured interviews were conducted with 32 parents and analyzed using thematic analysis. Themes revolved around parent needs including respite care, greater access to the SMA community, own mental health, and education for health care professionals. Parents expressed interest in a parenting program that covered appropriate consequences, guidance on increasing child autonomy, SMA treatment information, and advice on preparing children for school. Qualitative findings highlighted unique parenting experiences and enthusiasm for a preventative parenting program that promotes parent well-being while providing parenting support.