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Growing Up with Huntington’s Disease in the Family: What Does the Research Tell Us?
A systematic review exploring the intergenerational psychological effects of having a parent with Huntington’s disease on well-being, anticipatory loss, and trauma.
Systematic Review | Uruj Anjum & Donna-Maria Dodson
October, 2026
Huntington's disease (HD) is often understood through the lens of genetic risk, symptoms and disease progression. But for children growing up in a family affected by HD, its psychological impact can begin long before a genetic test or the development of symptoms. Our systematic review brought together 18 studies exploring what it can mean to grow up with a parent affected by Huntington's disease, with particular attention to relationships, caregiving, uncertainty, identity, loss, coping and support. The review identified three overarching themes and highlights the importance of understanding HD not only as an inherited neurological condition, but as an experience that can shape relationships and family systems across generations.
About This Research
Authors: Uruj Anjum, MSc, MBACP (Accred) & Donna-Maria Dodson, RGN, MBACP
Affiliation: Saiyna Therapy, Kent, UK
Review: Mixed-methods systematic review
Studies included: 18
Presented at: EHDN Clinical Research Congress 2026, Krakow — Poster F003
Published abstract: Journal of Neurology, Neurosurgery & Psychiatry
How was the review conducted?
Following PRISMA-guided screening, 18 studies were included in the final synthesis: 11 qualitative, six quantitative and one mixed-methods study. Studies were quality-appraised using MMAT and findings were brought together through thematic synthesis.
What did we find?
Across the 18 studies, Huntington’s disease emerged as more than an inherited neurological condition. Growing up with a parent affected by HD shapes relationships, family roles, identity, experiences of loss and expectations for the future.
Our synthesis identified three overarching themes. Importantly, experiences were not uniform. Alongside distress and disruption, the studies also highlighted resilience, emotional closeness and the potential protective role of supportive relationships, communication and coping.
Growing Up with Huntington's Disease
1. Growing up within a disturbed relational system
For some children and young people, growing up with Huntington's Disease meant living within relationships that could become unpredictable as a parent's symptoms and functioning changed. Across the studies, participants described experiences including parental change, emotional unpredictability, secrecy, disrupted attachment relationships and changing roles within the family. Some children and young people took on caregiving responsibilities or adult roles earlier than might otherwise have been expected. These experiences could affect emotional security, relationships and wellbeing beyond childhood.
However, this was not inevitable. The review also found evidence of resilience and emotional closeness, particularly where children experienced consistent caregiving and more open communication within the family
2. Living with inherited uncertainty, identity disruption and ambiguous loss
A recurring experience across the research was uncertainty. For people growing up with a parent affected by HD, uncertainty could exist on several levels: uncertainty about a parent's deterioration, their own genetic risk, future illness, relationships and what their future might look like. This could become intertwined with identity development, anticipatory grief and ambiguous loss—including the experience of grieving changes in a parent who is still physically present. Rather than uncertainty being confined to the decision about whether to undergo genetic testing, the studies suggested that it can form part of the wider developmental and psychological experience of growing up within an HD family.
3. Coping, support and pathways to resilience or distress
The review also showed that outcomes were not fixed. How people adjusted appeared to be shaped partly by the coping strategies and relationships available to them. Acceptance and cognitive appraisal were associated with more adaptive coping, while emotional suppression was linked with greater distress. Support from non-HD caregivers, peers and professionals also appeared protective.
At the same time, many studies identified significant gaps in support. Participants described unmet emotional and informational needs and a lack of professional understanding of the psychological burden associated with growing up in an HD family.
Looking across the three themes
Taken together, these findings suggest that the psychological impact of HD is shaped through an interaction between inherited risk and relational experience.
Attachment and caregiving experiences, family communication, uncertainty, loss, identity and access to support can intersect across the lifespan. Equally, open communication, supportive caregiving, adaptive coping and informed professional support may help buffer distress and support resilience. This is why the review argues for looking beyond genetic risk alone and considering Huntington’s disease through a relational, developmental and intergenerational lens.
A proposed concept: Anticipatory Trauma
Through the synthesis, we tentatively propose the term anticipatory trauma to describe the chronic psychological impact of living with anticipated future deterioration, loss and inherited uncertainty. This is proposed as a conceptual lens rather than an established or validated clinical construct, and further theoretical and empirical exploration is needed.
What does this mean for clinical practice?
Look beyond genetic risk
Consider attachment, relationships, caregiving experiences, identity and family history alongside inherited risk.
Recognise loss and uncertainty
Anticipatory grief, ambiguous loss and chronic uncertainty may be present long before genetic testing, symptoms or bereavement.
Work with the family system
Consider changing roles, communication, secrecy, caregiving and intergenerational patterns.
Strengthen protective factors
Supportive relationships, adaptive coping, communication and informed professional support may help buffer distress.
From research to practice: the S.A.I.Y.N.A.™ Framework
The S.A.I.Y.N.A.™ Framework is presented as a preliminary framework for considering inherited trauma, genetic uncertainty and relational disruption. Further empirical evaluation of its clinical utility, acceptability and effectiveness is required.
Important limitations
More longitudinal and culturally diverse research is needed to understand how these experiences differ across families, communities and stages of the HD journey.
Acknowledgements
The authors gratefully acknowledge Jo Oxley and Dr Gill Harvey for their research supervision and guidance. The review was undertaken at Optima Attachment Training as part of the CPCAB Level 7 Diploma.
About the authors
Uruj Anjum, MSc MBACP (Accred) is a psychotherapist, researcher, lecturer, supervisor, international speaker, and former NHS genetic counsellor. Her work focuses on the psychological and relational impact of inherited conditions, uncertainty, attachment, identity and intergenerational experiences.
Donna-Maria Dodson, RGN, MBACP, is a psychotherapist, researcher, supervisor, and retired nurse whose work brings together experience across physical and psychological health. She has a particular interest in supporting individuals and families living with inherited conditions, loss, uncertainty and changing family relationships. Donna co-authored this systematic review and is part of the team at Saiyna Therapy.
Appendix:
Studies included in the review:
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