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J Korean Soc Matern Child Health > Volume 26(3); 2022 > Article
Journal of The Korean Society of Maternal and Child Health 2022;26(3):194-203.
DOI: https://doi.org/10.21896/jksmch.2022.26.3.194    Published online July 31, 2022.
Experiences of Parenting Children With Spinal Muscular Atrophy
Hyo Jin Kim1, Sun-Mi Chae2 
1College of Nursing·Center for Human-Caring Nurse Leaders for the Future by Brain Korea 21 (BK21) Four Project, Seoul National University, Seoul, Korea
2College of Nursing·The Research Institute of Nursing Science, Seoul National University, Seoul, Korea
척수성 근위축증 아동 부모의 자녀 양육 경험
김효진1, 채선미2 
1서울대학교 간호대학·간호대학 4단계 BK21 미래 간호인재 양성사업단
2서울대학교 간호대학·간호과학연구소
Correspondence:  Sun-Mi Chae, Tel: +82-2-740-8816, Fax: +82-2-766-1852, 
Email: schae@snu.ac.kr
Received: 9 June 2022   • Revised: 10 July 2022   • Accepted: 11 July 2022
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.
Key Words: Child health, Parents, Parenting, Qualitative research, Spinal muscular atrophy
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