The experiences of partners of individuals with pre-symptomatic Huntington's disease: a reflexive thematic analysis.

IF 2 3区心理学 Q2 PSYCHOLOGY, MULTIDISCIPLINARY

Psychology & Health Pub Date : 2026-07-08 DOI:10.1080/08870446.2026.2697157

Lewis Pares, Fiona Eccles, Maria Dale, Jane Simpson

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引用次数: 0

Abstract

Objective: Individuals with the Huntington disease gene can often remain symptom free until their mid-40s. While the experiences of partners of individuals at the symptomatic stage of Huntington's disease have been explored, the experiences of the partner in this pre-symptomatic stage have been largely ignored. This qualitative study explores the experiences of partners of individuals with pre-symptomatic Huntington's disease to provide new insights into the perspectives of and challenges to partners during this stage.

Methods and measures: Eight partners (five women and three men) of individuals (four women, four men) with pre-symptomatic Huntington's disease from three different countries (UK, US and Canada) took part in individual, semi-structured interviews. Reflexive thematic analysis was used to create themes.

Results: The analysis resulted in three themes: (1) Partners' navigation of time and uncertainty during the pre-symptomatic stage;(2) Immersion in the research: a road to hope; (3) Us versus the world: how the shared experience of HD strengthened relationships.

Conclusion: Partners were affected by Huntington's disease even before symptoms appeared and developed proactive strategies to manage uncertainty and future planning. Couples often navigated these challenges together, strengthening their relationship through communication and shared decision-making. The study highlights implications for supporting partners' psychological well-being in both research and clinical practice.

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患有症状前亨廷顿病的个体的伴侣的经历：反身性专题分析。

目的：携带亨廷顿病基因的个体通常可以在40多岁之前保持无症状。虽然在亨廷顿氏病症状阶段的个体伴侣的经历已经被探索，但在症状前阶段的伴侣的经历在很大程度上被忽视了。本定性研究探讨了症状前亨廷顿病个体伴侣的经历，为这一阶段伴侣的观点和挑战提供了新的见解。方法和措施：来自三个不同国家（英国、美国和加拿大）的症状前亨廷顿病患者（4女4男）的8位伴侣（5女3男）参加了个人半结构化访谈。反身性主位分析被用来创造主位。结果：分析得出三个主题：(1)症状前阶段伴侣的时间导航和不确定性；(2)沉浸于研究：一条通往希望的道路；(3)我们与世界：HD的共享经验如何加强关系。结论：伴侣甚至在症状出现之前就受到亨廷顿舞蹈病的影响，并制定了积极的策略来管理不确定性和未来计划。夫妻们经常一起应对这些挑战，通过沟通和共同决策来加强他们的关系。该研究强调了在研究和临床实践中支持伴侣心理健康的含义。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Psychology & Health Multiple-

CiteScore

7.30

自引率

3.00%

发文量

期刊介绍： Psychology & Health promotes the study and application of psychological approaches to health and illness. The contents include work on psychological aspects of physical illness, treatment processes and recovery; psychosocial factors in the aetiology of physical illnesses; health attitudes and behaviour, including prevention; the individual-health care system interface particularly communication and psychologically-based interventions. The journal publishes original research, and accepts not only papers describing rigorous empirical work, including meta-analyses, but also those outlining new psychological approaches and interventions in health-related fields.