针对多发性硬化症患者的共同体育活动：多发性硬化症患者及其照顾者在二元体育活动干预中的高质量参与体验
Physical Activity Together for MS: Quality Participation Experiences of People With Multiple Sclerosis and Their Caregivers in a Dyadic Physical Activity Intervention.
作者信息
Fakolade Afolasade, Lambert Miles, Keeling Mariah, Cardwell Katherine, Broitman Emily, Freedman Mark, Finlayson Marcia L, Latimer-Cheung Amy, Pilutti Lara A
机构信息
From the School of Rehabilitation Therapy, Queen's University, Kingston, ON, Canada.
Providence Care Hospital, Kingston, Canada.
出版信息
Int J MS Care. 2025 Mar 17;27(Q1):82-89. doi: 10.7224/1537-2073.2023-105. eCollection 2025 Jan.
BACKGROUND
Despite unequivocal evidence for the benefits of regular physical activity (PA), many people with multiple sclerosis (MS) and their family caregivers find it challenging to fully participate to the same extent as the general population. Achieving full participation in PA requires addressing both quantity and quality of participation. Although elements fostering quality participation (QP) in people with disabilities are increasingly recognized, our knowledge of how QP is experienced and fostered in dyadic PA interventions targeting MS dyads is limited. Therefore, we aimed to explore QP experiences of MS dyads during a 12-week, group-based, dyadic, behavioral PA intervention to inform future efforts to optimize full participation in PA in these groups.
METHODS
We conducted semistructured interviews with 6 participants who completed the dyadic intervention. Data were inductively analyzed using thematic analysis and deductively mapped to the Quality Parasport Participation Framework.
RESULTS
We identified 6 themes mapped to the 6 building blocks (autonomy, belonging, challenge, engagement, mastery, and meaning) of quality participation that provide insights into how people with MS and their caregivers experienced QP in the intervention. Additionally, various intervention characteristics that fostered QP experiences were identified, including the dyadic approach, program duration, financial incentivization, individualized tailoring of program components, group composition and dynamics, facilitator knowledge and expertise related to MS and caregiving, and the opportunity for participants to apply the knowledge gained in the group sessions.
CONCLUSIONS
Our findings outline QP considerations for researchers and interventionists designing dyadic PA programs in MS, offering insights that can inform the development of such programs to support full participation for both people with MS and their caregivers.
背景
尽管有明确证据表明定期体育活动（PA）有益，但许多多发性硬化症（MS）患者及其家庭护理人员发现，要像普通人群一样充分参与体育活动具有挑战性。实现充分参与体育活动需要解决参与的数量和质量问题。虽然促进残疾人高质量参与（QP）的因素越来越受到认可，但我们对于在针对MS患者及其护理人员的二元体育活动干预中，人们如何体验和促进高质量参与的了解有限。因此，我们旨在探索MS患者及其护理人员在为期12周的、基于小组的、二元行为体育活动干预中的高质量参与体验，以为未来优化这些人群充分参与体育活动的努力提供信息。
方法
我们对6名完成二元干预的参与者进行了半结构化访谈。使用主题分析对数据进行归纳分析，并将其演绎映射到高质量残疾人体育参与框架。
结果
我们确定了6个主题，这些主题映射到高质量参与的6个构建要素（自主性、归属感、挑战、参与度、掌握程度和意义），这为了解MS患者及其护理人员在干预中如何体验高质量参与提供了见解。此外，还确定了各种促进高质量参与体验的干预特征，包括二元方法、项目持续时间、经济激励、项目组成部分的个性化定制、小组构成和动态、促进者与MS和护理相关的知识和专业技能，以及参与者应用在小组会议中获得的知识的机会。
结论
我们的研究结果概述了研究人员和干预人员在设计针对MS患者的二元体育活动项目时应考虑的高质量参与因素，提供了可为开发此类项目提供信息的见解，以支持MS患者及其护理人员的充分参与。
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