Allin Sonya, Shepherd John, Tomasone Jennifer, Munce Sarah, Linassi Gary, Hossain Saima Noreen, Jaglal Susan
Department of Physical Therapy, University of Toronto, Toronto, ON, Canada.
School of Kinesiology and Health Studies, Queen's University, Kingston, ON, Canada.
JMIR Rehabil Assist Technol. 2018 Mar 21;5(1):e6. doi: 10.2196/rehab.8158.
Rehospitalization rates resulting from secondary conditions in persons with spinal cord injuries (SCI) are high. Self-management programs for many chronic conditions have been associated with decreases in hospital readmissions. However, in the SCI community, evidence suggests that satisfaction with traditional self-management programs is low. Users with SCI have indicated preference for programs that are online (rather than in-person), that target SCI-specific concerns, and are led by peers with SCI. There is currently no program with all of these features, which addresses self-management of secondary conditions after SCI.
The aim of this study was to provide details of a participatory design (PD) process for an internet-mediated self-management program for users with SCI (called SCI & U) and illustrate how it has been used to define design constraints and solutions.
Users were involved in development as codesigners, codevelopers, and key informants. Codesigners and codevelopers were recruited from consumer advocacy groups and worked with a core development team. Key informants were recruited from geographically distributed advocacy groups to form a product advisory council that met regularly with the core team. During meetings, codesigners and informants walked through stages of work that typify PD processes such as exploration, discovery, and prototyping. This paper details the process by analyzing 10 meetings that took place between August 2015 and May 2016. Meetings were recorded, transcribed, and subjected to an inductive thematic analysis; resulting themes were organized according to their relationship to PD stages.
A total of 16 individuals participated in meeting discussions, including 7 researchers and 9 persons with SCI from 4 Canadian provinces. Themes of trust, expertise, and community emerged in every group discussion. The exploration stage revealed interest in online self-management resources coupled with concerns about information credibility. In general, participants indicated that they felt more confident with information received from trusted, in-person sources (eg, peers or health care professionals) than information found online. The discovery stage saw participants propose and discuss concepts to filter credible information and highlight community expertise, namely (1) a community-curated resource database, (2) online information navigators, and (3) group chats with peers. Several tools and techniques were collectively prototyped in an effort to foster trust and community; these are illustrated in the Results section.
A PD process engaging users as codesigners, codevelopers, and informants can be used to identify design concerns and prototype online solutions to promote self-management after SCI. Future work will assess the usability of the collectively designed tools among a broad population of Canadians with SCI and the tools' impact on self-efficacy and health.
脊髓损伤（SCI）患者因继发疾病导致的再住院率很高。许多慢性病的自我管理项目与降低医院再入院率有关。然而，在SCI患者群体中，证据表明对传统自我管理项目的满意度较低。SCI患者表示更喜欢在线（而非面对面）的项目，这些项目针对SCI特有的问题，并且由SCI患者同伴主导。目前还没有一个具备所有这些特征的项目来解决SCI后继发疾病的自我管理问题。
本研究的目的是详细介绍一个针对SCI患者的互联网介导自我管理项目（称为SCI&U）的参与式设计（PD）过程，并说明它是如何被用于定义设计约束和解决方案的。
用户作为共同设计者、共同开发者和关键信息提供者参与项目开发。共同设计者和共同开发者从消费者权益倡导团体中招募，并与一个核心开发团队合作。关键信息提供者从地理上分布的倡导团体中招募，以组成一个产品咨询委员会，该委员会定期与核心团队会面。在会议期间，共同设计者和信息提供者经历了典型的PD过程阶段，如探索、发现和原型制作。本文通过分析2015年8月至2016年5月期间举行的10次会议来详细介绍该过程。会议进行了录音、转录，并进行了归纳主题分析；所得主题根据它们与PD阶段的关系进行组织。
共有16人参与了会议讨论，包括7名研究人员和来自加拿大4个省份的9名SCI患者。信任、专业知识和社区等主题出现在每次小组讨论中。探索阶段显示出对在线自我管理资源的兴趣，同时也对信息可信度表示担忧。总体而言，参与者表示，与从网上找到的信息相比，他们对从可信赖的面对面来源（如同伴或医疗保健专业人员）获得的信息更有信心。在发现阶段，参与者提出并讨论了过滤可信信息和突出社区专业知识的概念，即（1）一个由社区策划的资源数据库，（2）在线信息导航器，以及（3）与同伴的群聊。为了促进信任和社区，共同制作了几种工具和技术原型；结果部分对此进行了说明。
让用户作为共同设计者、共同开发者和信息提供者参与的PD过程可用于识别设计问题，并为促进SCI后的自我管理制作在线解决方案原型。未来的工作将评估共同设计的工具在广大加拿大SCI患者群体中的可用性，以及这些工具对自我效能和健康的影响。
