Høye Helene, Jahnsen Reidun Birgitta, Løvstad Marianne, Hartveit Jeanette Folkvord, Sørli Hilde, Tornås Sveinung, Månum Grethe
Department of Research, Sunnaas Rehabilitation Hospital, Nesodden, Norway.
Department of Clinical Neurosciences for Children and Research, Oslo University Hospital, Oslo, Norway.
Front Neurol. 2020 Apr 3;11:195. doi: 10.3389/fneur.2020.00195. eCollection 2020.
Adults with cerebral palsy experience challenges related to lifelong disability, such as stress, fatigue, pain and emotional issues. E-health services can be delivered regardless of residence and level of functioning. The aim of this pilot study was to explore the potential benefits and feasibility of a mindfulness-based program delivered to adults with cerebral palsy via group video conferencing. Six adults with cerebral palsy received an 8 week mindfulness group-based program via video conferencing. A multiple single-case study design was applied, including quantitative and qualitative elements. Pain was assessed 16 times through the study period. Questionnaires were administered to gather data on pain catastrophizing, stress, fatigue, emotional distress, positive and negative affect, and quality of life. A focus group interview addressed experiences with the intervention and the mode of delivery. The participants' pain levels showed varied trajectories. Pain catastrophizing and negative affect were statistically significant decreased. Qualitative data indicated benefits from mindfulness in coping and stress management. The video conferencing delivery was evaluated as feasible, with no major adverse effects. Since the pilot study had a small sample size, potential treatment benefits should be interpreted with caution. However, this pilot study provides important information in the planning of future larger and controlled studies on mindfulness-based interventions programs via video conferencing for adults with cerebral palsy and other persons living with long-term disability.
患有脑瘫的成年人面临与终身残疾相关的挑战，如压力、疲劳、疼痛和情绪问题。电子健康服务无论居住地点和功能水平如何都可提供。这项试点研究的目的是探索通过群组视频会议向患有脑瘫的成年人提供基于正念的项目的潜在益处和可行性。六名患有脑瘫的成年人通过视频会议接受了为期8周的基于正念的群组项目。采用了多单案例研究设计，包括定量和定性元素。在研究期间对疼痛进行了16次评估。发放问卷以收集有关疼痛灾难化、压力、疲劳、情绪困扰、积极和消极情绪以及生活质量的数据。进行了焦点小组访谈，以了解干预措施和交付方式的体验。参与者的疼痛水平呈现出不同的轨迹。疼痛灾难化和消极情绪在统计学上显著降低。定性数据表明正念在应对和压力管理方面有好处。视频会议交付方式被评估为可行，没有重大不良反应。由于试点研究的样本量较小，对潜在治疗益处的解释应谨慎。然而，这项试点研究为未来针对患有脑瘫的成年人及其他长期残疾者通过视频会议开展更大规模的基于正念的干预项目的对照研究提供了重要信息。
