Facebook Support Groups in Systemic Lupus Erythematosus: A Content Analysis
Notice bibliographique
Résumé
Background: There are many disease-specific groups on Facebook, which offer a convenient way to exchange information and support. This may be particularly helpful for patients affected with uncommon diseases, such as systemic lupus erythematosus (SLE). The content of SLE-related Facebook support groups, however, has yet to be explored and evaluated. Objective: The objective of this study was to analyze the content of Facebook support groups related to SLE, specifically evaluating the nature of the information shared and the pattern of use. Methods: Two independent investigators searched for the term “lupus” on Facebook’s native search function, from 10/08/2011 to 01/04/2012. Groups related to SLE, operating in English and/or French, and publicly accessible, were included for analysis. Information regarding the purpose of the group, its administrator, as well as the number and type of user-generated contributions were extracted. The content of support groups were then analyzed using a previously developed coding scheme. Results: We found 173 SLE groups on Facebook containing a total of 42,240 members. Roughly half (53%) of the groups were created for support, while 33% were for disease awareness, and 14% for fundraising. The largest group included 30,972 members and was intended for raising awareness. 3,469 members were found in support groups, representing 8% of the overall membership (but 31% of the overall membership when excluding the largest group). The median number of members was 11 (interquartile range, IQR, 39). The most frequent locations of support groups were the United States (44%), Canada (10%), and United Kingdom (10%). In support groups, the total number of user-generated contributions was 1932, including wall posts (54%), comments (32%), discussion posts (10%), and discussion threads (4%), while the median number of user-generated contributions was 5 (IQR 20). Conclusions: Support groups for SLE patients represent a substantial proportion of Facebook groups dedicated to SLE. Given their convenience, accessibility, and potential audience, Facebook support groups might represent an efficient way to reach patients with SLE who are internet users and improve their health-related quality of life. Further research is needed to evaluate the effects of this type of support groups on patients with SLE. Keywords: Systemic lupus erythematosus, lupus, support groups, Facebook. Read more →
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 distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,000 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
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 tête enseignante, 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 ».