J Korean Acad Nurs.  2012 Oct;42(5):609-621. 10.4040/jkan.2012.42.5.609.

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

• Kang SY

• KMID: 1499489
• DOI: http://doi.org/10.4040/jkan.2012.42.5.609

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.

Keyword

Hunter's syndrome; Parenting; Life experiences

MeSH Terms

Adaptation, Psychological
Child
Female
Focus Groups
Humans
Interviews as Topic
Life Change Events
Mothers/*psychology
Mucopolysaccharidosis II/diagnosis/*psychology
Parenting/*psychology
Social Support
Stress, Psychological

Figure

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  Figure 1 Model of mothers' life experiences in parenting the children with Hunter's syndrome.

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