“I Was Just So Concerned That This Was Going to Be a Lifetime of Problems for Him”: Caregiver Experience of Children Diagnosed with Lyme Arthritis in Nova Scotia
Notice bibliographique
Résumé
Objectives Nova Scotia (NS) has the highest incidence of Lyme disease (LD) in Canada.[1] The pediatric rheumatology clinic in Halifax, NS, has seen a significant increase in the number of referrals for Lyme arthritis (LA) over the past decade. There exist unanswered questions and controversies related to LD, including the link between long-term chronic symptoms and LD, primarily described in adult literature.[2] Our objective was to explore the perceptions of caregivers of children diagnosed with LA regarding knowledge about LD prior to diagnosis, views on the care provided, and attitudes toward their child’s ongoing health in relation to the LD diagnosis. Methods Patients diagnosed with LA between January 1 to December 31, 2022, were identified from a tertiary care pediatric rheumatology clinic in Halifax, NS. Purposive sampling was conducted based on the age of the child, clinical course, and health zone of residence. Parents were invited to participate in the study via a letter. Telephone interviews, using a semi-structured interview guide, were recorded and transcribed. Themes were abstracted from transcripts using an open coding and general inductive approach. Results 14 interviews (10 mothers, 4 fathers) were completed [median age of child 8.5 (range 3-14)]. Eight patients had resolution of LA following the first course of antibiotics and 6 required further treatment to reach symptom resolution. All 4 NS health zones were represented. Five themes were identified (selected quotes are presented in Table 1): (1) Pre-existing negative perceptions. Caregivers had negative connotations informed by learning of experiences of acquaintances and celebrities with LD. (2) Lack of awareness about LD presentation in children. Caregivers were not aware that arthritis is a manifestation of LD or that a bullseye rash may not be present. (3) Need for reassurance. Caregivers were relieved when referred to a specialist and took comfort in having the chance to ask questions and be given a clear treatment plan. (4) Emotional impact. Caregivers experienced persistent guilt (eg, they should have prevented the infection) and fear about reinfection. (5) Responsibility to spread awareness. Caregivers felt the need to share their knowledge and experience in their communities around the symptoms and presentation of LD in children. Table 1. Selected quotes from caregivers relating to the five themes. Conclusion Healthcare providers have an opportunity to anticipate caregivers’ perceptions of LD and provide evidence-based education and reassurance. Despite the high incidence of LD in NS, there is a need to improve public knowledge about manifestations of LD in children, particularly LA. [1.] Gasmi S. Can Commun Dis Rep 2022;48(5):219-27. [2.] Marques A. Infect Dis Clin North Am 2022;36(3):621-38.
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 | 0,002 | 0,006 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,000 | 0,001 |
| Études des sciences et des technologies | 0,004 | 0,002 |
| Communication savante | 0,002 | 0,001 |
| Science ouverte | 0,001 | 0,002 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,001 | 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 ».