A96: The Roller Coaster of Juvenile Idiopathic Arthritis: A Qualitative Examination of Parents' Emotional Responses to the Disease and Its Management
Notice bibliographique
Résumé
Background/Purpose: During a recent study we conducted to identify patients, parents, and clinicians' priorities in describing the course of juvenile idiopathic arthritis (JIA), parents expressed intense emotions related to the disease and its management even a decade after their children's diagnosis. Here we describe the predominant emotional experiences reported by parents and how they relate to different phases of the disease manifestation, treatments, and interactions with peers and healthcare providers. Methods: We analyzed focus group transcripts and reciprocal interview answers involving 9 experienced English‐speaking parents, 5 experienced French‐speaking parents and 8 novice parents (between 2 and 6 months since diagnosis). Their children were 2 to 16 years of age and had a variety of JIA subtypes and disease severity. Qualitative analysis included review of audio recordings to enrich transcripts (based on pauses, noises, and other non‐verbal cues), coding of emotional experiences by two investigators using a list of 69 emotion labels, coding verification by two other investigators, and analytical discussion and synthesis by our interdisciplinary team (to agree on what emotions were predominant at different stages of the disease, who or what were those emotions directed at, and how disease characteristics or parent background shaped them). Results: The time between onset and diagnosis was described by parents as a period of mounting anxiety, confusion and frustration with healthcare providers before a firm diagnosis was reached. The time shortly after diagnosis was described as a time of shock, disbelief, and fear during which parents often used denial as a coping mechanism; combined with feeling overwhelmed by a sea of information about the disease. Later in the disease course, at times of disease quiescence the predominant emotions were annoyance and worry about treatment side effects, and the fear of unpredictable flares. At times of increasing or ongoing symptoms the predominant emotions were admiration for the way their children coped with the disease, and frustration with peers and teachers that could not appreciate justification for the changes in the child's willingness to engage in physical activity and school work. This was also a time of frustration with increasing treatment and side effects. Throughout the disease parents felt a sense of powerlessness and that the disease was a “time‐consuming roller coaster.” The subtype of arthritis did not affect the range of emotions experienced, but influenced the proportion of time in quiescence or ongoing symptoms, and the intensity of treatments and side‐effects. Conclusion: The emotional experiences of parents of children with JIA can be conceptualized, as a parent put it, as roller coaster ride made of intensely emotional ups and downs. This is similar to the emotional turmoil faced by parents of children with other chronic illnesses, but JIA usually does not confront them with the chronic grief produced by progressive degenerative illnesses or the threat of imminent death.
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 | 0,010 | 0,016 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,007 | 0,006 |
| Communication savante | 0,003 | 0,003 |
| Science ouverte | 0,001 | 0,003 |
| Intégrité de la recherche | 0,001 | 0,002 |
| 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 ».