Informal Caregivers Connecting on the Web: Content Analysis of Posts on Discussion Forums
Notice bibliographique
Résumé
Background: About 53 million adults in the United States offer informal care to family and friends with disease or disability. Such care has an estimated economic value of US $600 million. Most informal caregivers are not paid nor trained in caregiving, with many experiencing higher-than-average levels of stress and depression and lower levels of physical health. Some informal caregivers participate in web-based forums related to their caregiving role. Objective: This study aimed to explore how informal caregivers use easy-to-access caregiving web-based forums, including the types of information they share and seek from others. It also aimed to gain insights into the informal caregiver experience from the content these informal caregivers posted. Methods: The study population consisted of participants who posted on 5 web-based forums for informal caregivers between February and April 2024. Researchers extracted the first 6 responses to the first 20 questions and comments to appear posted by the informal caregivers in each of the 5 forums, removing any individually identifying information. We used a codebook thematic analysis approach to examine the data with Dedoose (SocioCultural Research Consultants). Researchers independently read all posts and coded the data. The author group discussed the codes, reiteratively refined them, and identified themes within the data. Results: The data consisted of 100 initial posts and 600 responses. Over half of the initial posts included specific questions, with the remaining initial posts sharing experiences or reflections. Posts ranged in length from a sentence to more than 500 words. Domains identified included handling interpersonal challenges, navigating complicated systems, gathering tactical coping strategies, managing emotions, and connecting with others in similar situations. Negative interpersonal interactions were mentioned 123 times, with 77 posts describing challenging situations with extended family. Posters inquired about accessing resources, with health care and health insurance included 51 times, while legal and financial concerns were addressed 124 times. Caregiving challenges were mentioned hundreds of times, including discussion of hygiene (n=18), nutrition (n=21), and desire for a caregiving break (n=47). Posters expressed emotion in their comments 180 times, which included 32 mentions of guilt and 26 mentions of positive emotion. The importance of web-based group support was mentioned 301 times. Conclusions: Informal caregivers play an essential role in society. Many experience multifaceted challenges related to their caregiving role, and some turn to the internet for community. Accessing web-based discussion forums is a low-barrier method for informal caregivers to connect with others who may be experiencing similar emotions and challenges. Gaining a greater understanding of the ways informal caregivers seek advice and offer support to one another provides insight into the challenges they face. The domains identified on these forums may be helpful, as clinicians provide information to care recipients and their informal caregivers along their health journeys.
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 | 0,008 | 0,037 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,008 | 0,006 |
| Études des sciences et des technologies | 0,002 | 0,001 |
| Communication savante | 0,002 | 0,003 |
| Science ouverte | 0,001 | 0,003 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 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 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 ».