| Title: |
Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study |
| Authors: |
Tomasone, Jennifer; Allin, Sonya; Shepherd, John; Munce, Sarah; Linassi, Gary; Hossain, Saima Noreen; Jaglal, Susan |
| Publisher Information: |
JMIR Rehabilitation and Assistive Technologies |
| Publication Year: |
2021 |
| Collection: |
Queen's University, Ontario: QSpace |
| Subject Terms: |
Health education; Internet; Spinal cord injuries; Self-management |
| Description: |
Background: 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. Objective: 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. Methods: 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. Results: 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 ... |
| Document Type: |
article in journal/newspaper |
| File Description: |
application/pdf |
| Language: |
English |
| Relation: |
http://hdl.handle.net/1974/28998 |
| DOI: |
10.2196/rehab.8158 |
| Availability: |
http://hdl.handle.net/1974/28998; https://doi.org/10.2196/rehab.8158 |
| Rights: |
Attribution 3.0 United States ; http://creativecommons.org/licenses/by/3.0/us/ |
| Accession Number: |
edsbas.58F0D2AC |
| Database: |
BASE |