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KMID : 1003020130140010001
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Qualitative Research
2013 Volume.14 No. 1 p.1 ~ p.12
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The Experience of Parents of Children with Mucopolysaccharidosis
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Park Hye-Sook
Kim Kwuy-Bun
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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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KEYWORD
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Mucopolysaccharidosis , Parents , Experience , Psychological stress , Ethnography
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