Browse > Article
http://dx.doi.org/10.4040/jkan.2012.42.5.609

Life Experiences of Mothers in Parenting Children with Hunter's Syndrome  

Kang, Sung Ye (Department of Nursing, Kkotongnae University)
Publication Information
Journal of Korean Academy of Nursing / v.42, no.5, 2012 , pp. 609-621 More about this Journal
Abstract
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. 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). 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'. 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.
Keywords
Hunter's syndrome; Parenting; Life experiences;
Citations & Related Records
Times Cited By KSCI : 2  (Citation Analysis)
Times Cited By Web Of Science : 0  (Related Records In Web of Science)
연도 인용수 순위
1 Oh, S. E. (2001). The lived experience of mothers of children with muscular dystrophy. Journal of Korean Academy of Child Health Nursing, 7(4), 421-433.
2 Oh, S. E. (2005). Caring experience of parents of children with muscular dystrophy. Korean Journal of Family Therapy, 13(2), 171-194.
3 Park, H. S., & Kim, K. B. (2011). Joys and sorrows in mothers of children with mucopolysaccharidosis. Journal of Korean Academy of Child Health Nursing, 17(1), 58-67. http://dx.doi.org/10.4094/jkachn.2011.17.1.58   DOI
4 Rose, N. (2007). The politics of life itself: Biomedicine, power and subjectivity in the twenty-first century. New Jersey: Princeton University Press.
5 Rozdzynska, A., Tylki-Szymanska, A., Jurecka, A., & Cieslik, J. (2011). Growth pattern and growth prediction of body height in children with muccopolysaccharidosis type II. Acta Paediatrica, 100(3), 456-460. http://dx.doi.org/10.1111/j.1651-2227.2010.02060.x   DOI
6 Sandelowski, M. (1986). The problem of rigor in qualitative research. Advances in Nursing Science, 8(3), 27-37.   DOI
7 Steele, R. G. (2002). Experiences of families in which a child has a prolonged terminal illness: Modifying factors. International Journal of Palliative Nursing, 8(9), 418-434.   DOI
8 Strauss, A., & Corbin, J. (1998). Basic of qualitative research: Techniques and procedures for developing grounded theory. CA: Thousand Oaks: Sage.
9 Yi, M. S., Choe, M. A., Hah, Y. S., Kim, K. S., Yih, B. S., & Kim, J. H. (2006). Mother's experience of caregiving for their children with schizophrenia. Journal of Korean Academy of Nursing, 36(1), 45-54.   DOI
10 Fitzgerald, R. (2008). Biological citizenship at the periphery: Parenting children with genetic disorders. New Genetics and Society, 27(3), 251-266. http://dx.doi.org/10.1080/14636770802326927   DOI
11 Goldman, A. (1996). Home care of the dying child. Journal of Palliative Care, 12(3), 16-19.
12 Johansson, A., Anderzen-Carlsson, A., Ahlim, A., & Andershed, B. (2010). Mothers' everyday experiences of having an adult child who suffers from long-term mental illness. Mental Health Nursing, 31(11), 692-699. http://dx.doi.org/10.3109/01612840.2010.515768   DOI
13 Lee, C. H. (2012, January 11). Green cross, Hunter syndrome medicine coming years 500 billion in annual sales goals. Korea Joongang Daily, E5.
14 Little, C., Gould, R., & Hendriksz, C. (2009). The management of children with Hunter syndrome-a case study. British Journal of Nursing, 18(5), 321-322.   DOI
15 Martin, R., Beck, M., Eng, C., Giugliani, R., Harmatz, P., Munoz, V., et al. (2008). Recognition and diagnosis of mucopolysaccharidosis II (Hunter syndrome). Pediatrics, 121(2), 377-386.   DOI
16 Metcalfe, A., Coad, J., Plumridge, G. M., Gill, P., & Farndon, P. (2008). Family communication between children and their parents about inherited genetic conditions: A meta-synthesis of the research. European Journal of Human Genetics, 16, 1193-1200. http://dx.doi.org/10.1038/ejhg.2008.84   DOI