Background As Huntington’s disease (HD) is a hereditary disorder, its effects are not just experienced by the affected individual; the disease therefore also has unavoidable implications for the functioning of that person’s family unit.
Aims The aim of the paper is to explore the psychological consequences of HD for the family. Previous studies have largely focussed on individual family members but little is known about the ways in which HD’s effects are jointly experienced by the wider family.
Methods/techniques To address this, the current qualitative study examined the experiences of dyads within affected families. Seven parent/adult child dyads were interviewed jointly about their experiences and relationships within their family. Interpretative phenomenological analysis (IPA) was used to analyse the data and to create overarching themes.
Results/outcome The three identified themes were: “A spectre hanging over us”: HD as a presence within the family; “Us against the world”: protection, knowledge and control; and “That could be me in 50 years”: Cyclical changes in identity and role.
Conclusion These findings are examined in relation to previous research and indicate the need for an increased understanding of the needs of HD families. Clinical implications and suggestions for further research are discussed.
- Huntington’s disease