Background: The average age for the onset of Huntington's disease (HD) is an age when many people have children and caretaking responsibilities; HD is therefore likely to impact the whole family, including children and adolescents. Despite an increased understanding of the challenges for young people of growing up in a family affected by HD, a continuing lack of available knowledge has led to inadequate youth-focused support in many countries.
Objective: This study explored the risks of growing up in a family affected by HD, and provided a participant-generated overview of the main challenges the participants experienced, in order to enhance awareness and promote more youth-focused support.
Methods: As part of a larger national study, this qualitative paper included 36 semi-structured interviews with young people and adults who had previous or current experiences of growing up in families affected by HD. The interviews were analysed using thematic analysis.
Results: The participants described challenges relating to four main domains of everyday life: family functioning, emotions and reactions, social functioning, and public and care services.
Conclusion: This study contributes to an increased understanding of risk factors posed on young people by growing up with a parent with HD. The study highlighted challenges in several areas of life presenting a risk to the overall health and functioning of young people. We propose that this knowledge should be applied within a bioecological framework, to increase understanding and promote awareness of the possible risks posed, for young people, by HD.
Keywords: Awareness; Huntington’s disease; challenges; knowledge; qualitative research; support; young people.