Exploring the Psychosocial and Relational Implications of Huntington’s Disease for Affected Family Systems: A Dyadic Thematic Analysis

<p dir="ltr">Literature Review</p><p dir="ltr">Huntington’s disease (HD) is a progressive neurodegenerative condition that significantly impacts people with HD (pwHD), family caregivers, and broader family systems. While a growing body of research has explored the psychosocial experiences of pwHD or family caregivers, there has been limited synthesis of how HD affects families collectively. This systematic review examines the psychosocial and relational implications of HD for pwHD and family caregivers. Nine qualitative and mixed-methods studies generated five superordinate themes via thematic synthesis: “Disintegration with society,” “the internal world in turmoil,” “an interplay of extrinsic stressors,” “destabilisation of the family system,” and “fearing the ambiguous future.” These highlighted shared emotional distress, relational strain, practical challenges, and disconnection for affected families. Limitations of the current evidence base and directions for future research are identified, including the underrepresentation of pwHD perspectives and the need for more culturally diverse samples.</p><p dir="ltr">Empirical Study</p><p dir="ltr">Despite growing interest in the psychosocial experiences of Huntington’s disease (HD), there is a significant gap in the literature regarding how these are experienced from a relational and dyadic perspective. This qualitative study explored the psychological, social, and relational impacts of HD through dyadic interviews with eight pairs (n = 16) of participants, each comprising a person with HD (pwHD) and their family caregiver. Data were analysed using reflexive thematic analysis, underpinned by a critical realist epistemological stance. Three overarching themes were developed: “Transformations in relationships and identity,” “social and systemic barriers,” and “navigating the psychological toll of HD”. These findings highlight the complexity of living with HD as a family system, with emotional burden, altered roles, disconnection, and commitment emerging as central components. Clinical implications include the need for family-informed psychosocial support, and future research recommendations include longitudinal, culturally inclusive, and multi-perspective designs to deepen our understanding of HD’s evolving impact.</p>