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Original Article
- Life Experiences of Mothers in Parenting Children with Hunter's Syndrome
- Sung Ye Kang
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Journal of Korean Academy of Nursing 2012;42(5):609-621.
DOI: https://doi.org/10.4040/jkan.2012.42.5.609
Published online: October 31, 2012
Department of Nursing, Kkotongnae University, Chungbuk, Korea.
- Address reprint requests to: Kang, Sung Ye. Department of Nursing, Kkotongnae University 133 Sangsam-gil, Hyundo-myeon, Cheongwon 363-823, Korea. Tel: +82-43-270-0174, Fax: +82-43-270-0120, srkang@kkot.ac.kr
• Received: February 9, 2012 • Accepted: September 17, 2012
© 2012 Korean Society of Nursing Science
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Abstract
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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.
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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 & Corbin (1998).
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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'.
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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.
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Figure 1
Model of mothers' life experiences in parenting the children with Hunter's syndrome.
Figure 1
Life Experiences of Mothers in Parenting Children with Hunter's Syndrome
Concepts, Sub-categories, and Categories of Mothers' Life Experiences in Parenting the Children with Hunter's Syndrome
Table 1
Concepts, Sub-categories, and Categories of Mothers' Life Experiences in Parenting the Children with Hunter's Syndrome
