Identifying Support Needs of Families Navigating Childhood Rheumatic Disease in Rural and Remote Regions of Northern British Columbia
Bibliographic record
Abstract
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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.006 | 0.001 |
| Scholarly communication | 0.002 | 0.000 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".