지원사업
학술연구/단체지원/교육 등 연구자 활동을 지속하도록 DBpia가 지원하고 있어요.
커뮤니티
연구자들이 자신의 연구와 전문성을 널리 알리고, 새로운 협력의 기회를 만들 수 있는 네트워킹 공간이에요.
초록· 키워드
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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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REFERENCES
참고문헌 (26)
참고문헌 신청
1. [학술지(정기간행물)] - Askelsdóttir, B / 2008 / From diagnosis to birth : Parents' experience when expecting a child with congenital anomaly / Advances in Neonatal Care : Official Journal of the National Association of Neonatal Nurses 8 (6) : 348 ~ 354
2. [학술지(정기간행물)] - 조인수 / 2009 / 지적장애아 부모의 양육스트레스와 대처방식 / 특수아동교육연구 11 (2) : 113 ~ 137
3. [단행본] - Cho, K. J / 2005 / Child and family nursing / Hyunmoonsa
5. [학술지(정기간행물)] - Choi, S. J / 1992 / Korean culture : Psychological self / Chung-Ang University Journal of Humanities 35 : 203 ~ 224
6. [학술지(정기간행물)] - Gagliardi, B. A / 1991 / The family’s experience of living with a child with Duchenne muscular dystrophy / Applied Nursing Research 4 : 159 ~ 164
2. [학술지(정기간행물)] - 조인수 / 2009 / 지적장애아 부모의 양육스트레스와 대처방식 / 특수아동교육연구 11 (2) : 113 ~ 137
3. [단행본] - Cho, K. J / 2005 / Child and family nursing / Hyunmoonsa
5. [학술지(정기간행물)] - Choi, S. J / 1992 / Korean culture : Psychological self / Chung-Ang University Journal of Humanities 35 : 203 ~ 224
6. [학술지(정기간행물)] - Gagliardi, B. A / 1991 / The family’s experience of living with a child with Duchenne muscular dystrophy / Applied Nursing Research 4 : 159 ~ 164
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UCI(KEPA) : I410-ECN-0101-2014-510-003193691