Experiences of Parenting Children With Spinal Muscular Atrophy

Abstract

Purpose: This study aims to describe the experiences of parenting children with spinal muscular atrophy.Methods: Participants consisted of 11 parents of children diagnosed with spinal muscular atrophy, more than 6 months prior to the study. Data were collected through one-on-one interviews and between 1 and 3 interviews were conducted per participant, between August and November 2021. Braun and Clarke's thematic analysis was used to analyze collected data.Results: This study described that the experience of parenting children with spinal muscular atrophy was based on four major themes: “a difficult journey from diagnosis to acceptance,” “changed life while parenting children,” “comfort even in the difficult parenting,” and “preparing for child's future happiness.” Conclusion: There is a need to provide comprehensive information about child rearing problems experienced by parents of children with spinal muscular atrophy. It is also necessary to develop supportive healthcare and social-welfare interventions to support the needs of children and families with spinal muscular atrophy.