H015 Experiences of young people growing up in a family with Huntington’s disease: a meta-ethnography of qualitative research

<h3>Background</h3> Huntington’s disease is a genetic neurodegenerative condition with physical, cognitive and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves and may grow up watching a parent develop symptoms of the condition. <h3>Aims</h3> This systematic review and meta-ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family affected by Huntington’s disease. <h3>Methods</h3> The MEDLINE, PsycINFO, AMED and CINAHL databases were systematically searched and 13 papers met the inclusion criteria. Meta-ethnography was used to synthesise the findings of the study to produce novel themes. <h3>Results</h3> Four themes were identified that highlighted 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 family affected by Huntington’s disease were explored such as the impact of adverse childhood experiences and the possible effects Huntington’s disease on attachment and social relationships. <h3>Conclusions</h3> The review highlights the significant level of distress experienced by young people in families with Huntington’s disease. The qualitative approach of this review adds the experiential voice of young people and a detailed understanding of the contributing factors that have resulted in such distress through the descriptions of Huntington’s disease as a thief and young people’s resulting need to try and reclaim aspects of themselves and their lives.