“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
Bibliographic record
Abstract
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.
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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 | 0.002 | 0.006 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.004 | 0.002 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.001 | 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".