“I’m in pain, and I’m not faking it”: A qualitative exploration of the reactions of youth with juvenile idiopathic arthritis and their caregivers to pain-related stigma
Notice bibliographique
Résumé
BACKGROUND: Juvenile idiopathic arthritis (JIA) is a chronic inflammatory condition often marked by pain in childhood. JIA pain has a variable course and often lacks any visible signs. As such, youth with JIA can experience negative judgement from others in response to their pain (i.e., pain-related stigma). Theoretical models indicate that pain-related stigma experiences contribute to affective, behavioural, and cognitive reactions from youth in the moment (i.e., situational) and over time (i.e., enduring) that ultimately influence their health. Caregivers also play a crucial role in supporting their children's health. While caregivers may protect their children from the potential negative impacts of pain-related stigma, caregivers can also be affected by their children's stigma experiences. Thus, this qualitative study aimed to explore both the situational and enduring reactions of youth with JIA and their caregivers to pain-related stigma. It also examined similarities and differences in their reactions to identify potentially protective reactions and areas where additional support may be needed. METHODS: Ten youth aged 15-19 years with JIA and 12 caregivers participated. Youth and caregivers completed separate semi-structured interviews. During interviews, participants were asked about the youth's experiences of pain-related stigma and how these experiences affected their situational and enduring cognitive, affective, and behavioural reactions. Interview transcripts were analyzed using reflexive thematic analysis. Themes generated between groups were triangulated to assess for convergence and divergence. A matrix analysis was subsequently used to develop meta-themes capturing overlapping concepts. RESULTS: Separate themes for each group were developed. The matrix analysis resulted in five meta-themes that capture the overlapping situational and enduring reactions of youth and caregivers to pain-related stigma: (1) addressing stigma and increasing perceived credibility; (2) responding to individual needs; (3) fear and avoidance due to anticipatory stigma; (4) long-term impacts on mental health and well-being; and (5) education and advocacy. CONCLUSIONS: Pain-related stigma can impact youth with JIA and their caregivers in various ways, with some reactions being protective of their health and well-being. Strategies to support youth with JIA and their caregivers with navigating pain-related stigma experiences are necessary to promote positive health outcomes.
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 | 0,008 | 0,001 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 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 | 0,000 | 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 ».