| Summary: | 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. === Graduate and Postdoctoral Studies === Graduate
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