Experiences of living with Huntingtons disease

Cooper, Hollie and Eccles, Fiona and Simpson, Jane and Dale, Maria (2023) Experiences of living with Huntingtons disease. PhD thesis, Lancaster University.

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Abstract

This thesis explores aspects of the lived experience with Huntington’s disease (HD). The first section presents a meta-ethnography, with the review question: ‘what is the experience of young people growing up in a family with HD?’ A systematic search was conducted which resulted in 13 papers for inclusion. Following the synthesis of the qualitative papers, 4 interrelated themes were formed: (1) thief of relationships, (2) thief of self, (3) thief of transparency and (4) search for reclamation. The findings contribute to understanding the complex impact of HD on the lives of young people and their experience of growing up in a family with HD. Further research could focus on psychological assessment to identify the needs of young people in HD families and, following this research, could assess the provision of services and the formation of accessible support. The second section presents the empirical research which sought to answer the question ‘what is the experience of maintaining psychological wellbeing when living at risk of HD?’ Twelve individuals living at risk of HD were interviewed using semi structured interviews. Interpretative Phenomenological Analysis (Smith et al., 2021) revealed three themes: (1) ‘you’re constantly in limbo’: living in two worlds, (2) “I have to live, just bloody live”: possibility of a time limited lifespan and (3) “is that who I am, is that what I am?”: the exhausting quest to be seen as an individual first. The findings explore how individuals managed their wellbeing and the complexities of living at risk. Further research could focus on the lack of support experienced by individuals and poor professional knowledge of HD. The third section presents a critical appraisal in which the similarities and differences of the meta-ethnography and empirical paper are discussed. Clinical implications are discussed further, with researcher reflections also presented.