A feasibility investigation of mindfulness-based cognitive therapy for people with Huntington's disease

Background Huntington’s disease (HD) is an inherited neurodegenerative condition which affects movement, coordination and cognitive functioning. Psychological difficulties are commonly experienced; however, psychological interventions have been little researched with this population. We investigated the feasibility of conducting a randomised controlled trial (RCT) of mindfulness-based cognitive therapy (MBCT) with people with the HD genetic mutation, either pre-manifest (before onset of movement symptoms) or at an early disease stage. Specifically, we evaluated the willingness of participants to be recruited into and complete the intervention; the acceptability of the study measures in relation to completion; the feasibility of offering the standard MBCT course to people with HD; the acceptability of the intervention and the estimated effect sizes. Methods Participants were recruited from two UK HD centres and took part in an 8-week course of MBCT, with three reunions throughout the following year. Stress, depression, anxiety, and mindfulness were measured pre-, mid-, and post-course, at 3 months and at 1 year. Sleep, quality of life, positive affect and coping were measured pre- and post-course, at 3 months and at 1 year. Descriptive data and approximate effect sizes were calculated. Interviews were conducted post-course and at 1 year and data pertaining to the acceptability of the course were extracted. Results Twelve participants took part in two groups; all were pre-manifest. Levels of depression and anxiety were low pre-course leaving little room for improvement. Changes in stress and in some aspects of mindfulness were medium to large. The qualitative data suggested participants rated the course highly and found it helpful and no changes to the standard course were needed. Recruitment levels were below those anticipated. Most measures were found to be acceptable. Conclusions Although the course was acceptable to those who took part, given the difficulties in recruiting and the rarity of HD, conducting an RCT of MBCT teaching groups in person does not seem feasible. However, alternative modes of course delivery (e.g. online) would allow the recruitment of people from a greater geographical area and may make an RCT feasible; this revised focus would be suitable for future feasibility studies

A pilot evaluation of mindfulness based cognitive therapy for Huntington's disease

Background Many people with the Huntington’s disease (HD) gene, both pre-manifest and manifest, experience low mood, anxiety and other psychological difficulties. Medication can alleviate these difficulties to some extent, but it is not effective for everyone, and is not always the preferred option. Psychological interventions may provide an alternative or additional way of alleviating distress. Aims To see if a particular type of psychological therapy, mindfulness-based cognitive therapy (MBCT), is an acceptable and useful way of alleviating psychological distress for people with the HD gene who are pre-manifest or at an early disease stage. Methods To date 10 pre-manifest HD gene carriers have completed an 8 week course of MBCT led by an experienced mindfulness teacher. The course consisted of weekly 2 hour sessions and up to an hour of home practice every day. Quantitative measures of anxiety, depression, stress and mindfulness were administered pre- and post-course. Qualitative data about participants’ experiences were gathered via semi-structured interview. We are currently recruiting for a second course and aim to run this in Autumn 2016. Results Mean depression levels were low pre-course and thus, unsurprisingly, little change was observed in mean depression post course. However, large effect sizes were seen for mean changes in anxiety and stress and in five aspects of mindfulness (describing, non-judging, non-reacting, observing and acting with awareness). The interview data (and participants’ regular attendance) also suggested that participants found the course acceptable. Furthermore they reported that they thought it beneficial for their wellbeing now and also that the skills they had learnt would be useful in the future. Conclusions MBCT appears to be an acceptable psychological approach for some pre-manifest individuals with the HD gene. Early results indicate that learning mindfulness is possible and can be beneficial. Further research is needed with larger samples to show if it can significantly reduce psychological distress and would benefit from including more individuals with raised depression at baseline to enable changes in depression to be detected. Some recruitment difficulties were encountered and these and the possible implications for future courses will be presented

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

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

The mental health and substance use treatment experiences of racially and ethnically minoritised women who have experienced sexual violence

The mental health and substance use treatment experiences of racially and ethnically minoritised women who have experienced sexual violence is not well understood. To address this we conducted a systematic review and meta-synthesis of qualitative studies. Our search strategy included electronic searches of 18 databases and grey literature, citation tracking and reference list screening. Studies were eligible if they presented qualitative data from racially and/or ethnically minoritised women or girls, who had experienced sexual violence at any age and described their experiences of receiving treatment from statutory mental health and/or substance use services. Studies were analysed using meta-ethnography. Fourteen papers based on 12 individual studies were included. Analysis developed three main themes: (1) understanding minoritised women holistically, (2) processing the trauma and beginning the healing and (3) the need for social connectedness and empowering relationships. For minoritised women to benefit from treatment, mental health and substance use services need to challenge the dynamics of the multiple traumas minoritised women experience. Knowledge and understanding of the racial trauma minoritised women experience is limited and many are subjected to further harm from racist practices occurring in some treatment services. Offering culturally safe, trauma-informed care which promotes anti- racist practices may help improve mental health and substance use service responses to minoritised women who have experienced sexual violence