Experiences of caring for a partner with Huntington’s Disease through pre and post clinical diagnosis : an interpretative phenomenological analysis

Huntington’s disease (HD) is a neurodegenerative genetic condition for which a predictive genetic test by mutation analysis has been available since 1993. However, whilst revealing the future presence of the disease, testing may have an adverse psychological impact given that the disease is progressive, incurable and ultimately fatal. The current literature review aimed to explore the published evidence base examining the psychological impact of predictive genetic testing for HD. Based on the synthesis of eight research studies, the process of predictive genetic testing was not found to be psychological neutral with fluctuating levels of distress irrelevant of test result. Methodological weaknesses were identified highlighting the needs of individuals not accessing testing or follow-up services, warranting further assessment. The research study sought to understand the lived experiences of partner carers of individuals diagnosed with HD throughout the disease trajectory. Qualitative interviews were conducted with six carers whose partners were currently accessing HD services. Analysis using Interpretative Phenomenological Analysis (IPA) revealed five super-ordinate themes with 18 sub-themes allowing for idiosyncrasies of respondents’ experiences to be accounted for. Themes were considered in relation to previous literature within HD and parallel fields with clinical implications highlighted. A need for further exploratory and subsequent quantitative research of phenomena was warranted and recommended. The critical appraisal provides the Researcher’s reflective account of the research process