Growing up with a Parent with Huntington’s Disease: A Qualitative Study of Adversity, Conversations and Social Support

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 y