Open Collections

Wainstein, Tasha

University of British Columbia

The provision of genetic counselling to adolescents with genetic conditions is inherently complex yet has not been a prominent research focus. In this thesis, I aimed to develop a program of research that supports the needs of adolescents with genetic conditions. I hypothesized that an improved understanding of adolescents lived and living experiences would facilitate the development of interventions that enhance available services. In the first study, I described the empirical findings that represent the genetic counselling field’s understanding of adolescents with genetic conditions. This was achieved by conducting a scoping review which found that most studies assessed adolescents’ knowledge of their genetic condition and communication of genetic risk information; less emphasis was placed on adaptation and lived experiences. This review demonstrated that a systematic reconsideration of the genetic counselling process is needed for adolescents with a genetic condition. For the second study, I evaluated how a genetic condition influences adolescents’ lives and how this knowledge can be used to improve healthcare interventions. Using a mixed methods approach, I developed a conceptual model which describes the complex identity journeys adolescents’ can take to integrate their genetic conditions into their self-construal and social identities. I also demonstrated how measures of psychological adaptation and illness identity may be useful to assess the state of genetic and disability identity development and determine the need for intervention, especially as it relates to navigating a society that is hampered by ableism. In the final study, I evaluated the influence of ableism on the lived and living experiences of adolescents with genetic conditions. This was achieved indirectly, by investigating the perceptions of typically developing adolescents towards their peers with genetic conditions in a mixed methods analysis. I demonstrated that opportunities for social and personal interactions in conjunction with improved genetics/genomics literacy may prove to be a useful intervention to address social biases towards their peers with genetic conditions. These findings underscore the need for healthcare providers, genetic counsellors, educators, and other interested parties to consider ways in which services can be enhanced to address the challenges adolescents may experience in navigating a genetic condition.

Text

2024-06-04

Attribution-NonCommercial-NoDerivatives 4.0 International

http://hdl.handle.net/2429/88405

Medical Genetics

University of British Columbia

UBCV

http://creativecommons.org/licenses/by-nc-nd/4.0/