The Ripple Effect: A Qualitative Overview of Challenges When Growing Up in Families Affected by Huntington’s Disease

Abstract

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.

Psychological reactions to predictive genetic testing for Huntington’s disease: A qualitative study

“…By considering the mutation status, other people (e.g., potential romantic partners) could also strongly influence the participants’ important life choices, such as in the area of education or in having children. Recent research supports the idea that young people's experiences of HD depend on a range of factors similar to those in the socio‐ecological framework (Kjoelaas et al, 2020). The findings highlight the need to evaluate the process of undergoing the test for HD not only as a personal choice but also as a lifelong process that is continuously influenced by a number of variables proximal and distant to an individual.…”

“…By considering the mutation status, other people (e.g., potential romantic partners) could also strongly influence the participants' important life choices, such as in the area of education or in having children. Recent research supports the idea that young people's experiences of HD depend on a range of factors similar to those in the socio-ecological framework (Kjoelaas et al, 2020…”

“…Data were extracted from a primary study involving a larger dataset collected through semi-structured interviews; the primary study is a component of a concurring project that investigates childhood experiences in families affected by HD (Kjoelaas, Tillerås, & Feragen, 2020). Given the focus of the original study, inheritance and predictive genetic testing were not covered in the interview guide.…”

‘I knew it wasn’t normal, I just didn’t know what to do about it’: adversity and caregiver support when growing up in a family with Huntington’s disease

“…This study explored ACEs of individuals who grew up with a parent with HD. Previous studies suggest that these young people can be exposed to several negative life events and challenging tasks (Kjoelaas et al, 2020;van der Meer et al, 2012). However, this is the first study to provide an in-depth exploration of this group's exposure to ACEs and the relationship between caregiver support and adversity.…”

“…Research has also suggested that children who grow up with a parent with HD often do not receive adequate support or help and are left with overwhelming responsibilities at home (e.g. Dondanville et al, 2019;Kjoelaas et al, 2020;Lewit-Mendes et al, 2018). To date, only one study has systematically explored the presence of adverse childhood experiences in relation to HD, indicating that this group of children experiences significantly more adversities, such as domestic violence and parental dysfunction, than children growing up with parents with another inheritable genetic disease (van der Meer et al, 2012).…”