Theed, Rachael and Simpson, Jane and Eccles, Fiona (2016) Psychological distress in the context of Huntington's disease. PhD thesis, Lancaster University.
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Abstract
This thesis is comprised of a scoping literature review, a research paper and critical appraisal which focus on psychological distress and psychological therapy in the context of Huntington’s disease (HD). The literature review is a scoping review of 29 papers looking at different aspects of irritability in the context of HD. The review examines the validity of irritability as a meaningful construct in HD. Clinical and theoretical implications as well as suggestions for further research are also discussed. The research paper investigates understandings of psychological distress in HD from the perspective of people with HD as well as seeking to understand people’s perspectives of psychological therapy. Semi-structured interviews were conducted with nine participants, prior to commencing a trial of mindfulness-based cognitive therapy (MBCT) and the data subsequently analysed using interpretative phenomenological analysis (IPA). Three themes emerged from the data: (1) Attributing psychological distress to HD: “you’re blaming everything on that now”; (2) Attribution across time: “in the past you’d just get on with it”; (3) Therapy instils hope and fight: “a light at the end of the tunnel”. The results are then discussed in terms of implications for the potential for psychological services to be available to people with HD alongside the need for further research into the acceptability of psychological approaches in the context of HD. The research paper highlights a predominant biological understanding of psychological distress with a more implicit psychological understanding presented, and a hope for psychological therapy to enable people to regain control over their experience. Finally, the critical appraisal reflects on some of the process issues encountered during the research including the impact of attending the MBCT group on the data analysis and barriers to recruitment.