Acceptability and potential benefit of a self-compassion intervention for people living with amyotrophic lateral sclerosis: a mixed methods pilot study.

IF 2.5 4区医学 Q2 CLINICAL NEUROLOGY

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Pub Date : 2024-09-11 DOI:10.1080/21678421.2024.2400516

Marion Sommers-Spijkerman,Aimée Zwarts-Engelbert,Esther Kruitwagen-Van Reenen,Ruben P A Van Eijk,Johanna M A Visser-Meily,Emmy Heijmans,Judith Austin,Constance Drossaert,Ernst Bohlmeijer,Anita Beelen

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引用次数: 0

Abstract

Objective: 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. Methods: 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 (n = 20) and semi-structured interviews (n = 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. Results: 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. Conclusions: 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.

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对肌萎缩性脊髓侧索硬化症患者进行自我同情干预的可接受性和潜在益处：一项混合方法试点研究。

研究目的这项概念验证研究旨在探索一种自我指导的在线自我同情干预方法的可接受性和潜在益处，以帮助 ALS 患者和护理人员提高应对能力，减少情绪困扰。研究方法对 20 名 ALS 患者或护理者进行了单臂试点研究。采用问卷调查（20 人）和半结构式访谈（9 人）的方式考察了接受度。评估潜在益处的标准是自我同情、自我批评和情绪困扰方面的变化，分别在 3 周和 6 周时使用心理问卷进行测定。问卷采用线性混合效应模型进行分析，访谈数据采用归纳主题分析法进行分析。结果在开始干预的 20 名参与者中，16 人完成了研究（80%）。大多数完成研究者（12/16）对干预措施表示满意，但数据表明在个性化方面还有改进的余地。定性数据揭示了使用干预措施的多种心理益处，包括自我亲切感、情绪自我意识和品味。尽管没有统计学意义，但定量数据显示出积极的趋势，与基线相比，第 6 周时自我同情增加（平均差异：2.07；95% CI：-.5.76 - 1.63），自我批评减少（平均差异：-2.62；95% CI：-.1.97 - 7.23），情绪困扰减少（平均差异：-2.49；95% CI：-.51 - 5.50）。结论研究结果表明，ALS 患者可以接受自我同情干预，但其有益效果和相关机制还有待通过对照设计，在更大规模和更多样化的样本中加以确定。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration CLINICAL NEUROLOGY-

CiteScore

5.40

自引率

10.70%

发文量

期刊介绍： Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration is an exciting new initiative. It represents a timely expansion of the journal Amyotrophic Lateral Sclerosis in response to the clinical, imaging pathological and genetic overlap between ALS and frontotemporal dementia. The expanded journal provides outstanding coverage of research in a wide range of issues related to motor neuron diseases, especially ALS (Lou Gehrig’s disease) and cognitive decline associated with frontotemporal degeneration. The journal also covers related disorders of the neuroaxis when relevant to these core conditions.