Participatory Design of an Online Self-Management Tool for Users With Spinal Cord Injury: Qualitative Study (Preprint)
Notice bibliographique
Résumé
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 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. CONCLUSIONS 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.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,030 | 0,033 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,010 | 0,009 |
| Communication savante | 0,004 | 0,005 |
| Science ouverte | 0,002 | 0,006 |
| Intégrité de la recherche | 0,002 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,005 | 0,001 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».