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Title: Huntington's disease : family experiences and presymtomatic genetic testing in young people
Author: Maxted, Caroline
Awarding Body: Lancaster University
Current Institution: Lancaster University
Date of Award: 2012
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This thesis comprises a literature review, research paper and critical review, relating to the impact and experiences of living with Huntington's Disease (HD) in the family. The narrative literature review critically examines research around the provision of presymptomatic genetic testing (PGT) to minors, responding to guidelines stating that testing should not be offered to legal minors. To examine this situation the paper draws upon evidence from related fields. It argues that young people are capable of making rational decisions, and should not be prevented from accessing the benefits of PGT. However, because the views of parents and clinicians are currently being prioritised over those of young people, many clinicians are preventing young people from accessing PGT. It is concluded that age is an inappropriate criterion by which to restrict access to PGT, and a competency based framework is suggested instead, with which young people could be assessed and, if appropriate, supported in their decision making. The research paper concerns an exploration of the cross-generational co-constructions of experience of parent/child dyads within families affected by HD. To address this, seven dyads were interviewed jointly about their experiences and relationships with their family and each other and interpretative phenomenological analysis was used to analyse the resultant data. Identified themes were: '''A spectre hanging over us": HD as a presence within the family', "'Us against the world": Protection, knowledge and control' and "'That could be me in 50 years": Cyclical changes in identity and role'. These findings are examined in relation to previous research and indicate the necessity for increased understanding of the needs of HD families. Clinical implications and suggestions for further research are discussed. The third component of the thesis is the critical review, which reflects upon a number of methodological challenges that arose during the research process.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (D.Clin.Psy.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available