Background Psychological difficulties such as low mood, anxiety and irritability are common in people with the Huntington’s disease (HD) gene, both pre-manifest and manifest. Whilst, medication can sometimes alleviate these difficulties it is not always effective or preferred. Mindfulness based cognitive therapy (MBCT) may offer an alternative or additional approach for reducing distress.
Aims To see if MBCT is an acceptable and useful way of alleviating psychological distress for pre-manifest people with the HD gene and to investigate these outcomes up to one year post the intervention.
Methods An 8 week course of MBCT was completed by 12 pre-manifest participants in two groups. Participants were then invited to attend 3 reunion meetings over the year in which the principles of the course were revisited. Quantitative measures of anxiety, depression, stress and mindfulness were administered pre-course, post-course, 3 months post-course, and at one year post-course. Qualitative data about participants’ experiences were collected immediately after the course and at one year.
Results Significant changes in some aspects of mindfulness (particularly non-judging and non-reacting) were seen at all points in follow up, although little change was seen in measures of distress. Interviews at immediate follow up suggested that participants found the course acceptable and useful. Most participants attended the reunion meetings and found these helpful both for supporting their mindfulness practice and for maintaining connection with other pre-manifest individuals. Participants were still using some aspects of mindfulness in their daily lives at one year and for some it had resulted in marked changes in their well-being.
Conclusions Learning mindfulness is possible and can be beneficial for pre-manifest individuals, with some learning and benefits retained after a year. Larger samples are needed including those with higher baseline depression, to show if it can significantly reduce psychological distress. Some recruitment difficulties were encountered and different ways of delivering the courses may need to be considered.
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