Identifying Support Needs of Families Navigating Childhood Rheumatic Disease in Rural and Remote Regions of Northern British Columbia
Notice bibliographique
Résumé
Objectives To identify barriers and facilitators to receiving pediatric rheumatology care for families navigating juvenile idiopathic arthritis (JIA) and other childhood rheumatic diseases (CRD) in Northern British Columbia (BC). Methods Parents/Caregivers of children with CRD living in Northern BC and receiving care at the 2 BC Children’s Hospital Rheumatology Outreach clinics located in Prince George and Terrace BC were invited to participate in an online survey and a subsequent semi-structured interview. Survey and interview questions focused on health needs and gaps relating to rheumatology care and were developed based on previous community engagement work in these clinics. Through in vivo coding, data was thematically analyzed and summarized into actionable themes. Results Nine families completed the survey, and 2 families participated in the interviews. Their children had a median age of 6 y. Distance to the rheumatology outreach clinic varied, with 45% of participants (n = 4) reported traveling less than 10 km, 10% (n = 1) traveling between 100 km-200 km, and 45% of respondents (n = 4) traveling more than 200 km. 70% of participants (n = 7) described: feeling that their child’s symptoms were initially dismissed by local health care providers, feeling that their child did not receive adequate medical attention from their general practitioners, feeling that their family’s case was overlooked multiple times, and ultimately resorting to emergency care. Helpful supports identified by participants following their child’s diagnosis included: 50% (n = 5) affirming that connection with other parents and families as helpful and 80% (n = 8) described or recommended examples of self-advocacy to support the journey to diagnosis. The thematic coding resulted in 4 actionable recommendations for the pediatric rheumatology health team and Cassie + Friends to take forward (Table 1). Conclusion Our findings demonstrate the emotional toll that children and families may experience while reaching a diagnosis and navigating CRD when living in Northern and rural BC. Connections to other local families, and encouragement for parental advocacy, were highlighted as positive actions for families. This community-based needs assessment allowed for the development of actionable solutions including disease-specific education for general practitioners, increased mental health services, regionally accessible supports, and local parent navigators which may promote a greater sense of support and well-being for Northern BC families impacted by CRD.
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 | 0,001 | 0,002 |
| 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 | 0,006 | 0,001 |
| Communication savante | 0,002 | 0,000 |
| Science ouverte | 0,001 | 0,002 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 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 ».