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

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.