Division of Health Research, Lancaster University, Lancaster, UK.
Leicestershire Partnership NHS Trust, Adult Mental Health Psychology, Leicestershire, UK.
J Genet Couns. 2022 Apr;31(2):375-387. doi: 10.1002/jgc4.1497. Epub 2021 Aug 10.
This paper explores the experience of ten individuals living in the UK who were in the pre-manifest stage of Huntington's disease (HD), a genetic neurodegenerative condition. Data were gathered using semi-structured interviews and analyzed using interpretative phenomenological analysis. Three themes were reported from the data: 'feeling limited by time', 'the perception of stalling time', and 'making the most of time', all highlighting the way in which time holds significant meaning when living in the pre-manifest stage of HD. This study has highlighted the difficulties experienced by individuals when adjusting to the pre-manifest stage of HD. Feeling able to manage their anxieties and dealing with ongoing uncertainty related to future deterioration was key to supporting their wellbeing, facilitated by factors such as positivity and hope. Individuals may benefit from counseling which supports them to develop proactive coping strategies to manage their anxieties and acceptance of an uncertain future.
本文探讨了居住在英国的 10 位亨廷顿病（HD）前期患者的个体经历。HD 是一种遗传性神经退行性疾病。研究采用半结构式访谈收集数据，并运用解释现象学分析方法进行分析。从数据中报告了三个主题：“受限于时间”、“感觉时间停滞”和“充分利用时间”，这些主题都突出了在 HD 前期阶段时间具有重要意义的方式。本研究强调了个体在适应 HD 前期阶段时所经历的困难。能够管理自己的焦虑并应对与未来恶化相关的持续不确定性，对支持他们的幸福感至关重要，而积极和希望等因素也促进了这一点。个体可能受益于咨询服务，以支持他们制定积极的应对策略来管理焦虑和对不确定未来的接受。
