The meaning of Ataxia: How do families experience it?
Date of Award
Doctor of Philosophy (PhD)
Marriage and Family Therapy
Ataxia, Families, Friedreich's ataxia, Genetic disorder, Hermeneutic phenomenological research, Qualitative research in families, Illness & family
Family, Life Course, and Society
Major life changes, particularly the diagnosis of genomic disorders, impact the entire family unit. In this study, I explore how families and individuals experience and give meaning to a diagnosis of Friedreich's Ataxia, (FRDA) a neurological, hereditary, incurable disease. Thirteen individuals 16 or older living with a diagnosis of FRDA participated in a face-to-face interview. A hermeneutic phenomenological approach was used to process and analyze the data. The analysis suggested that families living with FRDA become very resilient, flexible and adaptable to the challenges and losses associated with the illness. The families I interviewed focused on the present and believed the illness made them value life more. Results indicated that the diagnosis affects the roles and family dynamics. Additionally, the families focused on the disease, the ill member, and the impending death of the diagnosed.
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Castaneda, Maria del Pilar, "The meaning of Ataxia: How do families experience it?" (2010). Marriage and Family Therapy - Dissertations. Paper 41.