기사
헌터증후군 환아 어머니의 양육경험
- 개인저자
- 강성례
- 수록페이지
- 609-621 p.
- 발행일자
- 2012.10.24
- 출판사
- 한국간호과학회
초록
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
qqqamp; 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.