Department of Physical Therapy, University of Alabama at Birmingham, Birmingham, AL, USA.
Department of Kinesiology, Health Promotion, and Recreation, University of North Texas, Denton, TX, USA.
Disabil Rehabil Assist Technol. 2023 Nov;18(8):1385-1392. doi: 10.1080/17483107.2021.2010819. Epub 2021 Dec 10.
Exercise is a safe, evidence-based approach for improving symptoms such as mobility impairment, cognitive dysfunction, and fatigue; however, persons with multiple sclerosis (MS) who use wheelchairs for mobility have been excluded from most research. This paper describes our approach for recruiting ten community advisor board (CAB) members and partnering with them on developing a novel home-based exercise training program for wheelchair users with MS.
The exercise training program, which was developed based on initial qualitative research, includes a progressive exercise prescription, equipment, and one-on-one behavioural coaching based on Social Cognitive Theory. The CAB members convened in groups of five people for five meetings online, using virtual conference software. The CAB meetings each lasted approximately 1-hour and notes were transcribed into digital format for data analyses.
Content analysis identified elements that aligned with meeting foci (i.e., prescription, equipment, coaching, and outcomes). Feedback was divided into categories to refine the program, specifically modifying, adding, or retaining content and/or activities. CAB member feedback was very positive and emphasised potential additions to the materials presented. The research team proposed implementing modifications based on the CAB member feedback such as adding wrist weights to the equipment options for completing resistance training exercises.
The overall CAB feedback was invaluable for assessing the appropriateness of the proposed exercise training program before initiating feasibility testing. This report provides a model and guidance for researchers who seek community-engaged research approaches in creating products and interventions.Implication for RehabilitationCommunity advisory board participation was invaluable in creating and modifying a novel exercise training programmes for wheelchair users with multiple sclerosis (MS).The current study provides a framework for the creation of exercise interventions for subpopulations of persons with MS that may provide substantial rehabilitation benefits such as improved symptoms and quality of life.Health behaviour interventists targeting individuals with disabilities may consider the benefits of recruiting stakeholders from the community in creation of novel programmes.
运动是改善行动障碍、认知功能障碍和疲劳等症状的安全、基于证据的方法；然而，大多数研究都将需要轮椅辅助行动的多发性硬化症（MS）患者排除在外。本文介绍了我们招募 10 名社区顾问委员会（CAB）成员并与他们合作，为使用轮椅的 MS 患者开发新的家庭运动训练计划的方法。
该运动训练计划是基于初步的定性研究制定的，包括一个渐进的运动处方、设备以及基于社会认知理论的一对一行为辅导。CAB 成员使用虚拟会议软件在线分成五人一组召开了五次会议。每次 CAB 会议大约持续 1 小时，并将会议记录转录为数字格式进行数据分析。
内容分析确定了与会议重点（即处方、设备、辅导和结果）一致的元素。反馈分为几类，以完善该计划，具体包括修改、添加或保留内容和/或活动。CAB 成员的反馈非常积极，并强调了对所呈现材料的潜在补充。研究团队根据 CAB 成员的反馈提出了修改建议，例如在设备选项中添加手腕重量以完成阻力训练练习。
在开始进行可行性测试之前，CAB 的总体反馈对于评估拟议的运动训练计划的适当性非常宝贵。本报告为研究人员提供了一个模型和指导，用于在创建产品和干预措施时采用社区参与的研究方法。
社区顾问委员会的参与对于为多发性硬化症（MS）轮椅使用者创建和修改新型运动训练计划非常宝贵。
目前的研究为针对 MS 亚人群的运动干预措施的创建提供了框架，这些干预措施可能会带来显著的康复益处，例如改善症状和生活质量。
针对残疾个体的健康行为干预者可能会考虑从社区招募利益相关者来创建新的方案。
