Experiences of young people growing up in a family with Huntington's disease : A meta‐ethnography of qualitative research

Cooper, Hollie and Simpson, Jane and Dale, Maria and Eccles, Fiona J. R. (2024) Experiences of young people growing up in a family with Huntington's disease : A meta‐ethnography of qualitative research. Journal of Genetic Counseling. ISSN 1059-7700

Abstract

Huntington's disease is a genetic neurodegenerative condition with wide physical and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves. This systematic review and meta‐ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family with Huntington's disease. The MEDLINE, PsycINFO, and CINAHL databases were systematically searched, and 13 papers met the inclusion criteria. Through the process of meta‐ethnography, four themes were identified highlighting aspects of childhood that were stolen and fought for: thief of relationships, thief of self, thief of transparency, and search for reclamation. Within the themes, the complex challenges young people faced when growing up in a HD family were explored such as the impact of adverse childhood experiences and the possible effects of HD on attachment and social relationships. Clinical implications are considered, and recommendations are made for future research.