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권은경 ( Kwon Eun-Kyung ) - 삼성서울병원
최미혜 ( Choi Mi-Hye ) - 중앙대학교 의과대학 간호학과
김수강 ( Kim Su-Kang ) - 중앙대학교 간호과학연구소
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Abstract
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Purpose: The purpose of this research, using descriptive correlation design was to identify the extent to which the mothers having children with rare genetic metabolic diseases(MPS, PWS) have parenting stress and guilt feeling.
Method: This study used PSI /SF(Abidin, 1995) and Guilt Index as devised herein. From 156 mothers, data were collected from February to July 2006, using self-administered questionnaires. This study received the approval from IRB
at S Hospital (IRB File No: 2006-02-014). Data were analyzed with descriptive statistics, t-test, ANOVA, and correlation.
Results: Mothers felt very high level of parenting stress and sense of guilt. Parenting stress was related positively to guilt feeling.
Conclusion: These findings could help understand the families of children with rare genetic metabolic diseases and those provide basic information in developing effective counseling and education programs for relief of parenting stress and guilt feeling. This study would be significant in the fact that it is the first research, targeting on the families of children with rare genetic metabolic diseases in Korea.
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KeyWords
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희귀유전대사질환 아동, 희귀질환 아동, 양육 스트레스, 죄책감
Parenting, Stress, Guilt, Children, Genetic disease, Rare disease
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원문 및 링크아웃 정보
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등재저널 정보
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