Morgan Kerri A, Wong Alex W K, Walker Kim, Desai Rachel Heeb, Knepper Tina M, Newland Pamela K
Program in Occupational Therapy, St. Louis School of Medicine, Washington University, St. Louis, MO, United States.
Center for Rehabilitation Outcomes Research, Shirley Ryan AbilityLab, Chicago, IL, United States.
JMIR Form Res. 2022 Dec 21;6(12):e40166. doi: 10.2196/40166.
BACKGROUND: Fatigue significantly affects daily functioning in persons with disabilities. Fatigue management can be challenging, and the information provided during routine physician visits to manage fatigue can be overwhelming. One way to address fatigue is to increase knowledge, skills, and confidence for self-management (ie, patient activation). Self-management programs have shown promising effects in targeting fatigue in persons with disabilities. However, satisfaction with self-management programs is low for persons with disabilities, and tailoring interventions to personalized needs has been recommended. SMS text messaging is increasingly being used to implement health behavior change interventions in a person's natural environment. Little has been done to link mobile health approaches with patient activation and self-management to address fatigue in persons with disabilities. OBJECTIVE: This study aimed to develop and test a mobile phone-based fatigue self-management SMS text messaging intervention targeting patient activation in 3 groups of persons with disabilities: persons with multiple sclerosis, persons who had a stroke, and persons with a spinal cord injury. METHODS: We used evidence-based resources and input from a consumer advisory board (CAB; composed of 2 participants from each of the 3 disability groups) and a neurologist to develop the intervention. The study was conducted using a 4-step process: development of the initial SMS text messaging library and categorization of the content into 9 content areas, review and modification of the SMS text messages by the neurologist and CAB, integration of the content library into a digital platform, and utility testing by CAB members. RESULTS: A total of 6 CAB participants rated SMS text messages covering 9 domain areas of fatigue self-management with good clarity (mean ratings=3.5-5.0 out of 5) and relevance (mean ratings=3.2-5.0 out of 5). Overall, SMS text messaging content was reported by CAB participants as helpful, clear, and well suited for a mobile health intervention. The CAB reached consensus on the time of day that SMS text messages should be sent (morning) and their frequency (once per day). This feedback led the research team to narrow down the program to deliver 48 SMS text messages, 1 per day, Monday through Thursday only, a total of 4 SMS text messages per week, over a 12-week period. The final set of SMS text messages was programmed into a digital platform with a predefined delivery schedule. The usability of the intervention was high, with 55 (83%) out of 66 responses endorsing the highest rating. CONCLUSIONS: This study demonstrates a step-by-step process for developing a fatigue self-management SMS text messaging intervention for persons with disabilities. For this population, whose access to health services is often limited, this intervention provides an alternative delivery model to increase access to fatigue information and deliver content that aligns with the person's needs.
背景:疲劳对残疾人的日常功能有显著影响。疲劳管理可能具有挑战性,并且在常规医生问诊期间提供的用于管理疲劳的信息可能过多。解决疲劳的一种方法是增加自我管理(即患者激活)的知识、技能和信心。自我管理计划在针对残疾人的疲劳方面已显示出有希望的效果。然而,残疾人对自我管理计划的满意度较低,因此建议根据个性化需求调整干预措施。短信文本消息越来越多地被用于在自然环境中实施健康行为改变干预措施。在将移动健康方法与患者激活和自我管理联系起来以解决残疾人的疲劳方面,几乎没有做什么工作。 目的:本研究旨在开发并测试一种基于手机的疲劳自我管理短信文本消息干预措施,该措施针对三组残疾人:多发性硬化症患者、中风患者和脊髓损伤患者的患者激活情况。 方法:我们利用循证资源以及消费者咨询委员会(CAB;由三个残疾群体中各两名参与者组成)和一名神经科医生的意见来开发该干预措施。该研究采用四步流程进行:开发初始短信文本消息库并将内容分类为9个内容领域,由神经科医生和CAB对短信文本消息进行审查和修改,将内容库集成到数字平台中,以及由CAB成员进行实用性测试。 结果:共有6名CAB参与者对涵盖疲劳自我管理9个领域的短信文本消息进行了评分,清晰度良好(平均评分=3.5 - 5.0分,满分5分)且相关性良好(平均评分=3.2 - 5.0分,满分5分)。总体而言,CAB参与者报告短信文本消息内容有帮助、清晰且非常适合移动健康干预。CAB就短信文本消息的发送时间(早上)和频率(每天一次)达成了共识。这些反馈促使研究团队将该计划缩小到在12周内每天发送4条短信文本消息,仅周一至周四发送,每周总共4条短信文本消息。最终的短信文本消息集被编程到一个具有预定义发送时间表的数字平台中。该干预措施的可用性很高,66份回复中有55份(83%)给出了最高评分。 结论:本研究展示了为残疾人开发疲劳自我管理短信文本消息干预措施的逐步过程。对于这个获得医疗服务机会通常有限的人群,这种干预措施提供了一种替代的交付模式,以增加获取疲劳信息的机会并提供符合个人需求的内容。
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