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KMID : 1025820190270010001
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Family and Family Therapy
2019 Volume.27 No. 1 p.1 ~ p.26
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Narrative Inquiry on Life Experiences of Mothers of Children with Rare Diseases
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Leee Jin-Ah
Seo Mi-A
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Abstract
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Objectives: This study aimed to conduct a narrative inquiry into the meaning of life experiences in mothers of children with rare diseases. Study participants were 3 mothers who took care of their children with the rare disease hemophilia for more than 20 years.
Methods: Date were collected through in-depth interviews between June and July, 2018. Three to seven interviews were conducted with each participant. The meaning of life experiences in participants was analyzed from the dimensions of interaction and continuity, utilizing the narrative inquiry analysis of Clandinin and Connelly (2000).
Results: The results identified ‘life as a conflict mediator’, ‘life as a sinner’, ‘life to live clutching a glass bowl’, and ‘life as being a comfort to oneself', and the meaning of life experience were retold as ‘chaos’ - ‘anxious attachment’ - ‘redefining’ - ‘acceptance and active coping’ - ‘recovery and accompanying’.
Conclusions: Consequently, it will be useful as a resource for the development of counseling and educational programs to support the emotional recovery and growth of the families and mothers of children with rare diseases. Furthermore, this study will provide a deeper understanding of the lives and meaning of experiences of mothers of children with rare diseases, which will contribute to greater efficiency in family therapy.
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KEYWORD
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rare disease, hemophilia, life experiences of mothers, narrative inquiry
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