Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study

Abstract

BackgroundRehospitalization 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.ObjectiveThe 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.MethodsUsers 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.ResultsA 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.ConclusionsA 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.

Bridging the gap: A user-driven study on new ways to support self-care and empowerment for patients with hip fracture

“…PD is progressively being used in the development of tele-health solutions to support patients or individuals with long-term illnesses and promote their participation in healthcare. 63 Incurring a hip fracture is an acute and traumatic event, and individual’s recovery process was characterised by a desire to distance themselves from the event. 11 Hence, previous patients were reluctant to attend workshops and get involved in the design process.…”

Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation

“…Web-based support materials were housed in a publicly accessible, curated information resource for SCI management [ 31 ], and a secure platform was designed to support confidential one-on-one interactions between the participants and web-based peer health coaches [ 32 ]. Both were developed using participatory processes [ 23 ]; the development of the coaching platform was additionally supported by an application program interface provided by a Toronto-based company called QoCHealth [ 33 ]. This allowed an in-house development team to create videoconferencing tools for Google Chrome browsers, tailored lists of topic-specific health information, and secure forms for goal setting and BAP ( Figure 1 ).…”

“…This is because, in the context of telephone-based programs, peer coaches have been perceived by participants as powerful motivators for behavior change and relevant, credible mentors for skill development [ 22 ]. Structures have been created to support participation by members of the Canadian SCI community in the program’s development [ 23 ]; these include a community advisory board and interdisciplinary design team. This kind of participatory approach reflects that of other research groups [ 13 - 16 , 20 ] and is intended to promote end user acceptance [ 24 ] and respect for guidelines for the creation of health programs serving individuals with disabilities [ 25 ].…”

Co-designing a Self-Management App Prototype to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Mixed Methods Study

“…Rather, there is a need to engage different stakeholder groups in the development of self-management programs to ensure that solutions meet the requirements for successful implementation and favorable health outcomes [ 14 ]. Accordingly, there has been a significant increase in participatory approaches to design and improve self-management programs for individuals with chronic health conditions [ 18 - 21 ]. A particular area of research that has developed from this trend for participatory approaches is the co-design of mobile health (mHealth) apps [ 22 - 25 ].…”