|
KMID : 0892720220260030194
|
|
Journal of the Korean Society of Maternal and Child Health
2022 Volume.26 No. 3 p.194 ~ p.203
|
|
|
Experiences of Parenting Children With Spinal Muscular Atrophy
|
|
Kim Hyo-Jin
Chae Sun-Mi
|
|
|
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.Purpose: This study aims to describe the experiences of parenting children with spinal muscular atrophy.
|
|
|
KEYWORD
|
|
|
Child health, Parents, Parenting, Qualitative research, Spinal muscular atrophy
|
|
|
FullTexts / Linksout information
|
|
|
|
|
Listed journal information
|
|
|