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Caregiving challenges and support needs of South Korean mothers raising children with Angelman syndrome: a qualitative study
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DOI：10.1186/s12912-026-05228-0.png)
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Abstract
En 中文
Angelman syndrome is a rare genetic condition characterized by complex developmental disabilities and lifelong care needs. However, current support systems in South Korea do not fully address the specific needs of individuals with Angelman syndrome and their families. This study aimed to explore the caregiving challenges and related support needs of South Korean mothers raising children aged 8–18 years with Angelman syndrome. This qualitative study employed thematic analysis. Ten South Korean mothers who were the primary caregivers of children aged 8–18 years with Angelman syndrome were recruited through a study announcement posted on the official website of the Korean Angelman Syndrome Family Association. Semi-structured interviews were conducted between April 3 and April 16, 2025, and the data were analyzed using Braun and Clarke’s six-phase thematic analysis framework. The thematic analysis identified six themes: (1) Initial diagnostic shock and psychological neglect, (2) Navigating symptoms and their effects on daily life, (3) Caregiving isolation and social barriers, (4) Institutional limitations and disparities in rehabilitation, (5) Blind spots in educational rights and systemic gaps, and (6) Acceptance of disability and desires for a social safety net. The findings indicate that current support systems do not fully address the multifaceted caregiving and support needs of mothers raising children with Angelman syndrome. The findings highlight the need for expanded public care services that respond to the specific characteristics of the condition and for an integrated support system across healthcare, education, and social welfare. In particular, strengthening a lifelong social safety net may help ensure continuity of care and support the quality of life of individuals with Angelman syndrome and their families as primary caregivers age or experience changes in their circumstances. Not applicable.
Keywords:
Angelman syndrome
Qualitative research
Caregiving experiences
Support needs
Mothers
South Korea
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