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H018 The experience of maintaining psychological wellbeing when living at-risk of Huntington’s disease: an interpretative phenomenological analysis

Year: 2024
Type: conference-paper
Abstract: Background Living at risk of a genetically inherited disease can be a challenging experience causing psychological distress as well as physical health problems and therefore it is important to understand how people maintain wellbeing. Little is known about how people manage their psychological wellbeing while living at risk of Huntington’s disease (HD). Aims This paper explores the experience of managing psychological wellbeing while living at risk of HD. It presents insights into the complex skills and strategies used by participants to manage psychological wellbeing. Methods Twelve participants living at risk of HD took part in a semi-structured interview and interpretative phenomenological analysis methodology was used to understand their experiences of maintaining psychological wellbeing. Results Three themes were formed: (1) ‘You’re constantly in limbo’: living in two worlds, (2) ‘I have to live, just bloody live’: managing the 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. Conclusions The findings highlight the challenges of living at risk of HD and the need for improved support. Further research is required to create a psychological model that encapsulates the needs of those living at risk of HD. Changes to health care systems are also needed so that those at risk who need support are no longer excluded either by the diagnostic eligibility criterion (i.e. not being diagnosed with HD) and/or by lack of HD knowledge in generic health settings.
DOI: 10.1136/jnnp-2024-ehdn.248
Language: English
Open Access status: gold
OpenAlex ID: W4402374881
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