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

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posted on 2025-11-10, 11:49 authored by Paige Lindo, Tierney Tindall, Suzanne BuswellSuzanne Buswell, Selina LockSelina Lock, Sarah GunnSarah Gunn
<p dir="ltr">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.</p>

History

Author affiliation

University of Leicester College of Life Sciences Psychology & Vision Sciences

Version

  • VoR (Version of Record)

Published in

Clinical Genetics

Publisher

Wiley

issn

0009-9163

eissn

1399-0004

Copyright date

2025

Available date

2025-11-10

Language

en

Deposited by

Dr Sarah Gunn

Deposit date

2025-11-05

Data Access Statement

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.

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