Velissaris Sarah, Davis Marie-Claire, Fisher Fiona, Gluyas Cathy, Stout Julie C
Statewide Progressive Neurological Disease Service, Calvary Health Care Bethlehem, 476 Kooyong Rd., South Caulfield, 3162, VIC, Australia.
The Turner Institute for Brain and Mental Health, School of Psychological Sciences, Monash University, Melbourne, Australia.
J Community Genet. 2023 Aug;14(4):395-405. doi: 10.1007/s12687-023-00651-1. Epub 2023 Jul 17.
People with Huntington's disease (HD) face difficult emotional and practical challenges throughout their illness, including in the pre-symptomatic stage. There are, however, extremely limited psychosocial interventions adapted to or researched for HD. We adapted and piloted an 8-week mindfulness-based stress reduction (MBSR) program in people with pre-symptomatic HD to determine if the program (i) was feasible and acceptable to participants, (ii) resulted in increased mindfulness understanding and skills, and (iii) led to improved psychological adjustment. Quantitative measures of mindfulness, emotion regulation, mood, and quality of life were administered pre and post the MBSR program and at 3-month follow-up. Measures of mindfulness practice and session clarity were administered weekly. Qualitative participant feedback was collected with a post-program interview conducted by independent clinicians. Seven participants completed the 8-week course. The program's feasibility and acceptability was supported by excellent retention and participation rates and acceptable rates of home practice completion. In addition, qualitative feedback indicated participant satisfaction with the program structure and content. Two core mindfulness skills (observing and non-judgment) showed significant improvement from pre- to post-assessment. Participant qualitative feedback indicated increased confidence and capacity to use mindfulness techniques, particularly in emotionally challenging situations. Participant questionnaire data showed good psychological adjustment at baseline, which did not change after treatment. Psychological benefits of the program identified in qualitative data included fewer ruminations about HD, reduced isolation and stigma, and being seen by others as calmer. These findings justify expansion of the program to determine its efficacy in a larger, controlled study.
患有亨廷顿舞蹈症(HD)的人在整个病程中,包括症状前阶段,都面临着情感和实际方面的严峻挑战。然而,针对HD的社会心理干预措施极其有限,适应或研究的都很少。我们对症状前HD患者采用了一个为期8周的基于正念减压疗法(MBSR)的项目并进行了试点,以确定该项目:(i)对参与者是否可行且可接受;(ii)是否能提高正念理解和技能;(iii)是否能改善心理调适。在MBSR项目前后以及3个月随访时,对正念、情绪调节、情绪状态和生活质量进行了定量测量。每周对正念练习和课程清晰度进行测量。通过独立临床医生进行的项目后访谈收集了参与者的定性反馈。7名参与者完成了为期8周的课程。高保留率和参与率以及可接受的家庭练习完成率证明了该项目的可行性和可接受性。此外,定性反馈表明参与者对项目结构和内容感到满意。从评估前到评估后,两项核心正念技能(观察和非评判)有显著改善。参与者的定性反馈表明,使用正念技巧的信心和能力有所增强,尤其是在情绪具有挑战性的情况下。参与者问卷数据显示,基线时心理调适良好,治疗后没有变化。定性数据中确定的该项目的心理益处包括对HD的反复思考减少、孤立感和耻辱感降低,以及他人认为其更平静。这些发现为扩大该项目以在更大规模的对照研究中确定其疗效提供了依据。