Psychosocial Impacts of Huntington's Disease on Individuals, Relatives and Family Systems: A Thematic Synthesis

Huntington's disease (HD) has prevalent, life-altering consequences for affected individuals, relatives, familial caregivers and systemic functioning. However, the shared psychosocial impacts of HD across family systems are inadequately understood, and a synthesis of evidence regarding these experiences is currently lacking. This thematic synthesis provides an up-to-date integration of qualitative research describing psychological, social and relational difficulties experienced by HD families. A systematic search across PsycINFO, CINAHL, MEDLINE and Scopus identified nine qualitative studies. Four interconnected superordinate themes were developed, describing a disintegration of HD families from society, HD-related emotional and psychological burdens, an interplay of extrinsic stressors and recalibration of the family system. These findings extend existing knowledge about systemic impacts of HD, highlighting diverse and pervasive psychological and social difficulties faced by families. The synthesis recommends the development of interventions and clinical understandings to appropriately support family systems around psychosocial and relationship dynamic challenges in the unique context of HD.