Experiences of mindfulness-based cognitive therapy for premanifest Huntington’s disease

Eccles, Fiona, Craufurd, David, Smith, Alistair, Davies, Rhys, Glenny, Kristian, Homberger, Maximilian, Rose, Leona, Theed, Rachael, Peeren, Siofra, Rogers, Dawn, Skitt, Zara, Zarotti, Nicolò and Simpson, Jane (2021) Experiences of mindfulness-based cognitive therapy for premanifest Huntington’s disease. Journal of Huntington's Disease, 10 (2). pp. 277-291. ISSN 1879-6397

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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.

Item Type: Article
Additional Information: This is an author-created, un-copyedited version of an article accepted for publication/published in Journal of Huntington's Disease. IOS Publishing Ltd is not responsible for any errors or omissions in this version of the manuscript or any version derived from it. The Version of Record is available online at doi:10.3233/JHD-210471.
Uncontrolled Keywords: huntington’s disease,mindfulness,depression,anxiety,irritability,emotion regulation,premanifest,presymptomatic
Faculty \ School: Faculty of Medicine and Health Sciences > Norwich Medical School
Depositing User: LivePure Connector
Date Deposited: 23 May 2023 13:30
Last Modified: 23 May 2023 13:30
URI: https://ueaeprints.uea.ac.uk/id/eprint/92145
DOI: 10.3233/JHD-210471

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