How Cancer Survivors Provide Support on Cancer-Related Internet Mailing Lists
Notice bibliographique
Résumé
BACKGROUND: Internet mailing lists are an important and increasingly common way for cancer survivors to find information and support. Most studies of these mailing lists have investigated lists dedicated to one type of cancer, most often breast cancer. Little is known about whether the lessons learned from experiences with breast cancer lists apply to other cancers. OBJECTIVES: The aim of the study was to compare the structural characteristics of 10 Internet cancer-related mailing lists and identify the processes by which cancer survivors provide support. METHODS: We studied a systematic 9% sample of email messages sent over five months to 10 cancer mailing lists hosted by the Association of Cancer Online Resources (ACOR). Content analyses were used to compare the structural characteristics of the lists, including participation rates and members' identities as survivors or caregivers. We used thematic analyses to examine the types of support that list members provided through their message texts. RESULTS: Content analyses showed that characteristics of list members and subscriber participation rates varied across the lists. Thematic analyses revealed very little "off topic" discussion. Feedback from listowners indicated that they actively modeled appropriate communication on their lists and worked to keep discussions civil and focused. In all lists, members offered support much more frequently than they requested it; survivors were somewhat more likely than caregivers to offer rather than to ask for support. The most common topics in survivors' messages were about treatment information and how to communicate with health care providers. Although expressions of emotional support were less common than informational support, they appeared in all lists. Many messages that contained narratives of illness or treatment did not specifically ask for help but provided emotional support by reassuring listmates that they were not alone in their struggles with cancer. Survivors' explicit expressions of emotional support tended to be messages that encouraged active coping. Such messages also provided senders with opportunities to assume personally empowering "helper" roles that supported self-esteem. CONCLUSIONS: Many cancer survivors use the Internet to seek informational and emotional support. Across 10 lists for different cancers, informational support was the main communication style. Our finding of an emphasis on informational support is in contrast to most prior literature, which has focused on emotional support. We found the most common expressions of support were offers of technical information and explicit advice about how to communicate with health care providers. Topics and proportions of informational and emotional support differed across the lists. Our previous surveys of ACOR subscribers showed that they join the lists primarily to seek information; this qualitative study shows that they can and do find what they seek. They also find opportunities to play rewarding roles as support givers.
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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 | 0,011 | 0,002 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,000 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,001 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,004 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,006 | 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 ».