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Learning Objective 1: The learner will be able to understand illness narrative of families who live with Duchenne Muscular Dystrophy in Taiwan where ‘family continuity’ is of value.
Learning Objective 2: The learner will be able to understand how culture and chronic illness are interwoven with each other.
DMD (Duchenne Muscular Dystrophy) is a specific dominant sex-linkage chronic disease which only success from mother to son. Such disease is with a degenerate process which most ended at early adulthood by death. The truth of genetics heredity from mother, an outsider of husband’s family, to her son, the heir of family line challenges family where ‘family continuity’ is of value.
Purpose:
The aim of this study is to explore how families cope with DMD in such a specific culture. Suffering as well as cultural adaptation ware targeted.
Methods:
The researcher conducted interpretive ethnography to generate data from both interviews and participants in the field of Taiwan. For more than three years fieldwork, researcher followed through 23 families including mother, father and siblings. Each family received 3-8 times face to face long interviews combined with several phone calls to make sure saturation of data. Agar’s (1986) hermeneutic process scheme was used to analyze data.
Results:
Several story lines were draw from these families. Family reform is the first story line. ‘Second wife’ from Southeast Asia for deliver a healthy descendent, divorce but live together for children care, alienation from extended family, and all kinds of family reform have commonly seen in those family which encountering DMD. Second story line tells the suffering a woman experienced when she has a DMD child. Third story line reveals the issues of death and dying of DMD children.
Conclusion:
Culture plays a crucial role of human adaptation. Nurses need to involve the illness sphere of patients and families rather than only focus on disease domain of a person. For providing holistic care, all facets encountered by patients and families who live with DMD need to be included as a value element of nursing care.
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