Cadel Lauren, El-Kotob Rasha, Hitzig Sander L, McCarthy Lisa M, Hahn-Goldberg Shoshana, Packer Tanya L, Patel Tejal, Cimino Stephanie R, Lofters Aisha K, Ho Chester H, Asif Maliha, Guilcher Sara J T
Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, ON, Canada.
Institute for Better Health, Trillium Health Partners, Mississauga, ON, Canada.
BMC Health Serv Res. 2025 Apr 22;25(1):574. doi: 10.1186/s12913-025-12705-w.
Medications are among the most common health interventions, with certain populations, such as individuals with spinal cord injury/dysfunction (SCI/D), commonly prescribed multiple medications. Consequently, adults with SCI/D often engage in activities related to medication self-management, but there are few comprehensive resources for this population. The objective of this study was to co-design the prototype of a toolkit to support medication self-management among adults with SCI/D.
We conducted a participatory multi-methods study, using the Good Things Foundation Pathfinder Model as a guide for the co-design process. Participants included adults with SCI/D, caregivers, and healthcare providers. Following the model's three stages, we: (1) understood and defined the problem by conducting a scoping review, concept mapping study, and working group sessions; (2) created a prototype of the toolkit through working group sessions and website development meetings; and (3) tested the prototype through working group sessions.
The working group consisted of 19 individuals, including 9 adults with SCI/D, 1 caregiver, and 9 healthcare providers. In Stage 1, we identified the need for a comprehensive medication self-management resource through a scoping review, brainstormed content and delivery methods, and thematized and prioritized the content into eight categories through a concept mapping study. The concept mapping study included 44 participants, including 21 adults with SCI/D, 11 caregivers, and 12 healthcare providers. In Stage 2, feedback on the content mapped onto five categories: first impressions, message and purpose, visual elements, layout and flow, and graphics. The name, MedManageSCI, was selected by the working group. Through an iterative process with the website development company, an online version of the toolkit prototype was created ( www.medmanagesci.ca ). In Stage 3, participants provided recommendations to improve the website's functionality and navigation.
The co-design of the MedManageSCI prototype is a significant step toward addressing the medication self-management needs of adults with SCI/D. The implications of this work extend beyond SCI/D, highlighting the importance of tailored digital health resources for populations with complex healthcare needs. Future work is needed to refine the content, assess the feasibility, acceptability, and appropriateness of the toolkit, and examine outcomes related to medication self-management.
药物是最常见的健康干预措施之一,某些人群,如脊髓损伤/功能障碍(SCI/D)患者,通常会被开多种药物。因此,患有SCI/D的成年人经常参与与药物自我管理相关的活动,但针对这一人群的综合资源却很少。本研究的目的是共同设计一个工具包的原型,以支持患有SCI/D的成年人进行药物自我管理。
我们进行了一项参与式多方法研究,以好事基金会探索者模型作为共同设计过程的指南。参与者包括患有SCI/D的成年人、护理人员和医疗保健提供者。按照该模型的三个阶段,我们:(1)通过进行范围审查、概念映射研究和工作组会议来理解和定义问题;(2)通过工作组会议和网站开发会议创建工具包的原型;(3)通过工作组会议测试原型。
工作组由19人组成,包括9名患有SCI/D的成年人、1名护理人员和9名医疗保健提供者。在第一阶段,我们通过范围审查确定了对综合药物自我管理资源的需求,集思广益讨论了内容和交付方式,并通过概念映射研究将内容主题化并优先分为八类。概念映射研究包括44名参与者,其中21名患有SCI/D的成年人、11名护理人员和12名医疗保健提供者。在第二阶段,对内容的反馈分为五类:第一印象、信息和目的、视觉元素、布局和流程以及图形。工作组选择了“MedManageSCI”这个名称。通过与网站开发公司的迭代过程,创建了工具包原型的在线版本(www.medmanagesci.ca)。在第三阶段,参与者提出了改进网站功能和导航的建议。
MedManageSCI原型的共同设计是满足患有SCI/D的成年人药物自我管理需求的重要一步。这项工作的影响不仅限于SCI/D,还突出了为有复杂医疗需求的人群提供量身定制的数字健康资源的重要性。未来需要开展工作来完善内容,评估工具包的可行性、可接受性和适用性,并研究与药物自我管理相关的结果。