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김효진 ( Kim Hyo-Jin ) - Seoul National University College of Nursing
채선미 ( Chae Sun-Mi ) - Seoul National University College of Nursing
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Abstract
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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.
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KeyWords
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Child health, Parents, Parenting, Qualitative research, Spinal muscular atrophy
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원문 및 링크아웃 정보
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등재저널 정보
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