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UBC Theses and Dissertations

Self-understanding and identity : the experience of adolescents at risk for Huntington’s disease Easton, Jessica L.


Adolescence is a time when individuals begin to explore and examine psychological characteristics of the self in order to discover who they really are and how they fit in the social world in which they live. It is during this time of self-exploration that adolescents at risk for Huntington's Disease often learn of their risk status and witness the debilitating symptoms of the disease in their parents. Huntington Disease (HD) is an autosomal dominant neuropsychiatric disorder characterized by mid-life onset, involuntary movements, cognitive impairment, and depression. This dissertation investigated how adolescents experience living in a family with Huntington's Disease and therefore at risk for Huntington's Disease, and how this impacts their self-understanding and self-identity. The method of inquiry was based on a phenomenological approach. In-depth interviews were conducted with each of the adolescents. The data were analyzed using Van Manen's (1980) and Cochran and Claspell's (1987) format, resulting in an extraction of three themes. These themes are: (1) Naming the Legacy: Understanding and Misunderstanding; (2) Experiencing the Legacy: Huntington's Disease in Relation to Relationships; and (3) Integrating the Legacy: At the Crossroads of Self and Future Self. The analysis emphasizes that the at-risk adolescents' exploration of self-identity and future self was an individual process influenced by the cognitive, developmental, and socio-cultural contexts of the adolescents' lives. The process of learning about Huntington's Disease occurred through intuition and practical and experiential learning. The adolescents found support outside their family through friends and adult mentors. They engaged in complicated coping strategies and demonstrated a capacity for decision-making that displayed maturity beyond what would be expected for their age group. These findings led to specific recommendations for theory, research, and clinical practice in the area of the adolescent experience of HD. The research underscores the need for healthcare professionals to re-evaluate their view of adolescent autonomy and capacity for decision-making.

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