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박혜숙 ( Park Hye-Sook ) - 서울대학교 간호대학 가정방문간호센터
김귀분 ( Kim Kwuy-Bun ) - 경희대학교 간호과학대학
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Abstract
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Purpose:This study aimed to survey the parents of children with Mucopolysaccharidosis for joys and sorrows in the context of Korean culture, develop a theoretical model and explore effective nursing interventions.
Methods:The data was collected from 14 parents of children with Mucopolysaccharidosis from January 2010 till February 2011 and processed using Spradley’s categorization and analysis.
Results:The first domain, the cultural main theme for joys and sorrows in them is “Stigmatization to self”. And “Frustration to diagnosis result”, “Physical and psychological exhaustion”, “Incongruity between family”, “Anger about a shortage of social consideration”, and “Making new hope” are also the cultural domains. In a comparative cross-cultural view, Mothers are usually blamed and feel more guilty feeling for maternal genetic disease especially in Eastern culture while emotional status after diagnosis, physical and mental fatigues, and the emotional troubles are commonly seen in most cultures. There were also big differences in financial involvement of government for rare incurable diseases.
Conclusion:It is possible to promote social and cultural atmosphere to support the parents with Mucopolysaccharidosis by psychological consultation, detailed sufficient information, social policy, interventions for family, and activated self-helf meeting who are experiencing a various hardships physically, mentally, emotionally and socially.
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KeyWords
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뮤코다당증 , 부모 , 경험 , 애환 , 문화기술지
Mucopolysaccharidosis , Parents , Experience , Psychological stress , Ethnography
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원문 및 링크아웃 정보
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등재저널 정보
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