The aim of this thesis was to investigate the current and past experiences of young people who grew up with a parent with the progressive, inheritable, neurodegenerative condition Huntington’s Disease (HD). Past research has identified a range of factors that can create challenges in these young people’s lives, but they had not provided a sufficient understanding of the potentially dynamic nature these experiences.
The methodological approach used in this research is qualitative and includes an interpretative phenomenological framework and reflexive thematic analysis of data. A total of 36 participants with current or past experiences of growing up with a parent with HD, and 14 caregivers with experiences with having children with a partner with HD, participated in semi-structured interviews.
The first paper investigated adverse childhood experiences and the meanings made from these experiences in light of support, or lack of support, from caregivers without HD. The findings show that our participants experienced a range of adversity and distress in childhood, which led to ongoing feelings of unpredictability, loss, fear and a lack of love and care. The findings also show that the meanings young people made of these experiences were seemingly different when seen in light of the support, or lack of support, they felt they had from their caregivers without HD. In other words, participants who lacked support from caregivers were often overwhelmed by feelings of stress, whereas those with support described having coped and adjusted better in these experiences. These findings show the importance of strengthening resources and availability in caregivers without HD to promote coping and adjustment for this group.
The second article investigated both offspring and caregivers’ perspectives on having conversations about HD throughout childhood and revealed the many and often-difficult dilemmas both parts can encounter when talking about the disease. These dilemmas included when to tell, what to say, how often HD should be talked about on a day-to-day basis and whether or not to share disease-related information with people outside the family. Together, the paper highlights these young people’s need to understand their parent’s disease and their own life situation, and the need to build skills and strength in both the parent and the child, so that these conversations can be a tool of support according to each child’s individual needs.
The third article investigated young people’s experiences with social support in relationships outside the parent–child context. The findings of this article show the many and important ways relationships can be a resource in these young people’s lives and included the provision of love, care and a sense of belonging; facilitating coping skills; and helping to reduce or alleviate stressors at home. The findings also show the many ways support was hindered for these young people. Barriers to social support included the ‘invisible’ nature of symptoms of HD, the lack of understanding and acknowledgement from their parent with the disease and others, and the young people’s own need to protect themselves or their family.
This research comes together to understand better how children experience living with a parent with HD and to make it understood as a risk for a range of complex adverse experiences that can be understood and addressed through having sufficient resources in social support. In the thesis, co-occurring risks that were found within several contexts or relationships at the same time are addressed, as were the potential for protection in adversity by relationships with others and themselves. The thesis also addresses the participants’ experiences with risk and protection within broader systems of potential support, including potentially inherent dilemmas in the provision of support for this group found within the formal, ethical and legal contexts they grow up. The thesis identifies a potential to understand, conceptualise, and help these young people in similar manners and within similar frameworks as we would with other children who face risk and adversity in their developing lives.