J Korean Soc Matern Child Health.  2022 Jul;26(3):194-203. 10.21896/jksmch.2022.26.3.194.

Experiences of Parenting Children With Spinal Muscular Atrophy

• Kim HJ
• Chae SM

• KMID: 2532475
• DOI: http://doi.org/10.21896/jksmch.2022.26.3.194

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.

Keyword

Child health; Parents; Parenting; Qualitative research; Spinal muscular atrophy

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