K14 Understandings of psychological difficulties in people with huntington’s disease and their expectations of psychological therapy

Background Huntington’s disease (HD) is a chronic neurodegenerative disease which causes problems with movement, coordination, cognitive functioning, and is often also associated with a number of emotional difficulties. Currently, little evidence exists of the acceptability and efficacy of psychological approaches for people with HD. Given the dominance of biological accounts for psychological problems, it was considered important to understand whether beliefs about cause of distress and the possibility of therapy would be consistent. Aim This study sought to investigate how people with HD understand and experience psychological distress and their expectations of psychological therapy. Method A qualitative methodology was adopted involving semi-structured interviews and interpretative phenomenological analysis (IPA). A total of nine participants (five women and four men) who had opted in to engage in a trial of mindfulness-based cognitive therapy (MBCT) were recruited and interviewed prior to the MBCT trial. Interviews were transcribed verbatim and analysed using IPA whereby themes were analysed within and across transcripts and classified into superordinate themes. Results Three superordinate themes were developed: Attributing psychological distress to HD: “you’re blaming everything on that now”; Changes across time: “in the past you’d just get on with it”; Therapy instils hope and fight: “a light at the end of the tunnel”. Conclusion Understandings of psychological distress in HD ranged from biological to psychological explanations, with both often being accepted simultaneously by the same individual. Individual experience seemed to reflect a dynamic process whereby people’s understanding and experience changed over time. Psychological therapy was accepted as a positive alternative to medication, providing people with HD with hope that their psychological wellbeing could be enhanced.