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헌터증후군 환아 어머니의 양육경험

 Life Experiences of Mothers in Parenting Children with Hunter’s Syndrome

Journal of Korean Academy of Nursing 2012년 42권 5호 p.609 ~ 621
KMID : 0806120120420050609
강성례 ( Kang Sung-Ye ) - 꽃동네대학교 간호학과

Abstract

Purpose: The purpose of this study was to explore the experiences of Korean mothers in parenting children with Hunter’s syndrome, an X linked recessive genetically inherited disease usually affecting boys.

Methods: Data were collected from 14 mothers having children with Hunter’s syndrome, through two focus group interviews and individual in-depth interviews. Qualitative data from the field notes and transcribed notes were analyzed using the grounded theory methodology developed by Strauss & Corbin (1998).

Results: The core category about the process of rearing children with Hunter’s syndrome was identified as “navigating in the maze”. The process of rearing children with Hunter’s syndrome passed through three phases; ‘entering an unknown region’, ‘struggling to escape from the unknown region’, ‘settling down in the unknown region’.

Conclusion: In this study “navigating in the maze”, as the core category deeply showed joys and sorrows of mothers in the process of rearing their children with Hunter’s syndrome. In this rearing process they gradually adjusted themselves to their given condition. Also they gained initiatively coping strategies to care for, and protect their children. Therefore health care providers can establish supportive programs in the clinical field to empower these mothers by reflecting their proactive coping strategies.
KeyWords

Hunter’s syndrome, Parenting, Life experiences
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SCI(E) MEDLINE 학술진흥재단(KCI) KoreaMed