Experiences of Mindfulness-Based Cognitive Therapy for Premanifest Huntington’s Disease

Article type: Research Article

Authors: Eccles, Fiona J.R.^{a; *} | Craufurd, David^{b; c} | Smith, Alistair^a | Davies, Rhys^d | Glenny, Kristian^a | Homberger, Max^a | Rose, Leona^a | Theed, Rachael^a | Peeren, Siofra^{b; c} | Rogers, Dawn^{b; c} | Skitt, Zara^{b; c} | Zarotti, Nicolò^a | Simpson, Jane^a

Affiliations: [a] Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, UK | [b] Division of Evolution and Genomic Sciences, School of Biological Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK | [c] Manchester Centre for Genomic Medicine, Manchester University NHS Foundation Trust, Manchester Academic Health Science Centre, Manchester, UK | [d] The Walton Centre NHS Foundation Trust, Liverpool, UK

Correspondence: [*] Correspondence to: Fiona Eccles, Division of Health Re-search, Faculty of Health and Medicine, Lancaster University, Lancaster, LA1 4YT, UK. Tel.: +44 0 1524 592807; E-mail: f.eccles@lancaster.ac.uk.

Abstract: Background:Psychological difficulties such as anxiety, depression, and irritability are common in Huntington’s disease, even for premanifest individuals. However, very little evidence exists of psychological approaches to manage this distress. We have conducted a feasibility study with an embedded qualitative component to investigate the possibility of using mindfulness-based cognitive therapy (MBCT) and present here the findings from the qualitative data. Objective:To investigate the experience of premanifest individuals learning and practising mindfulness through completing a course of MBCT. Methods:Twelve premanifest individuals completed a course of MBCT and attended three follow up reunion meetings over the following year. Eleven participants agreed to be interviewed post-course and ten participants one year post-course about their experience of the course and any impact on their lives. Seven participants nominated a friend or relative (supporter) to be involved in the research, of whom six agreed to be interviewed post-course and two at one year about the impact of the course on the participants. Data were analysed using reflexive thematic analysis. Results:Four themes were constructed from the data: 1) A meeting of minds: the group facilitating learning and support; 2) Mindfulness is hard, but enables more effective emotional management; 3) Mindfulness can change the relationship with self and others; and 4) Benefiting from mindfulness: the importance of persistence. Conclusion:The participants who completed the course found it beneficial. Some participants reported reductions in psychological distress, a greater sense of calm and better emotion regulation, with some of these positive changes also noticed by supporters. MBCT is worthy of further investigation for this population.

Keywords: Huntington’s disease, mindfulness, depression, anxiety, irritability, emotion regulation, premanifest, presymptomatic

DOI: 10.3233/JHD-210471

Journal: Journal of Huntington's Disease, vol. 10, no. 2, pp. 277-291, 2021