Sommers-Spijkerman Marion, Zwarts-Engelbert Aimée, Kruitwagen-Van Reenen Esther, Van Eijk Ruben P A, Visser-Meily Johanna M A, Heijmans Emmy, Austin Judith, Drossaert Constance, Bohlmeijer Ernst, Beelen Anita
Department of Rehabilitation, Physical Therapy Science & Sports, Brain Center, University Medical Center Utrecht, Utrecht, The Netherlands.
Center of Excellence for Rehabilitation Medicine, University Medical Center Utrecht, and De Hoogstraat Rehabilitation, Utrecht, The Netherlands.
Amyotroph Lateral Scler Frontotemporal Degener. 2025 Feb;26(1-2):29-39. doi: 10.1080/21678421.2024.2400516. Epub 2024 Sep 11.
This proof-of-concept study aimed to explore the acceptability and potential benefit of a self-guided online self-compassion intervention to aid resilient coping and reduce emotional distress among patients and caregivers living with ALS.
A single-arm pilot study was conducted in 20 adults living with ALS either as a patient or as a caregiver. Acceptability was examined using questionnaires ( = 20) and semi-structured interviews ( = 9). Potential benefit was assessed as changes in self-compassion, self-criticism and emotional distress, determined using psychological questionnaires at 3 and 6 weeks. Questionnaires were analyzed using linear mixed-effects models and interview data using inductive thematic analysis.
Out of 20 participants who started the intervention, 16 completed the study (80%). The majority of study completers (12/16) were satisfied with the intervention, but the data suggest room for improvement in terms of personalization. Qualitative data revealed multiple psychological benefits of using the intervention, including self-kindness, emotional self-awareness and savoring. Although not statistically significant, quantitative data showed positive trends with increased self-compassion (mean difference: 2.07; 95% CI: -.5.76 - 1.63) and reduced self-criticism (mean difference: -2.62; 95% CI: -.1.97 - 7.23) and emotional distress (mean difference: -2.49; 95% CI: -.51 - 5.50) at week 6 compared to baseline.
The findings suggest that a self-compassion intervention is acceptable to people living with ALS, but its beneficial effects and the mechanisms involved have yet to be established in larger and more diverse samples, using controlled designs.
本概念验证研究旨在探讨一种自我引导的在线自我同情干预措施的可接受性和潜在益处，以帮助肌萎缩侧索硬化症（ALS）患者及其照护者进行适应性应对并减轻情绪困扰。
对20名成年ALS患者或照护者进行了单臂试点研究。使用问卷（n = 20）和半结构化访谈（n = 9）来检验可接受性。通过在第3周和第6周使用心理问卷来评估自我同情、自我批评和情绪困扰的变化，以此确定潜在益处。使用线性混合效应模型分析问卷数据，使用归纳主题分析方法分析访谈数据。
在开始干预的20名参与者中，16人完成了研究（80%）。大多数完成研究的参与者（12/16）对干预措施感到满意，但数据表明在个性化方面仍有改进空间。定性数据揭示了使用该干预措施带来的多种心理益处，包括自我友善、情绪自我意识和品味。虽然无统计学意义，但定量数据显示，与基线相比，在第6周时自我同情有所增加（平均差异：2.07；95%置信区间：-5.76至1.63）、自我批评有所减少（平均差异：-2.62；95%置信区间：-1.97至7.23）以及情绪困扰有所减轻（平均差异：-2.49；95%置信区间：-5.51至5.50），呈现出积极趋势。
研究结果表明，自我同情干预措施为ALS患者所接受，但其有益效果及相关机制仍有待在更大规模、更多样化的样本中采用对照设计来确定。
