Documenting the Experience of Parents of Children with Lyme Disease
Bibliographic record
Abstract
Title: Documenting the Experiences of Parents of Children with Lyme disease Background: Lyme disease is the most common vector-borne disease in the United States. Children are at greater risk due to their high-risk activities playing outside in tick-infested areas and not having adequate knowledge about ticks. Mainstream doctors' lack of knowledge and support often leads to parents feeling frustrated and discouraged. To date, few research studies have explored the experiences of parents of children with Lyme disease. Methods: A cross-sectional survey with 26 questions was distributed by email and social media in Fall 2022. Participants had to be over 18, be a parent of a child diagnosed with Lyme disease, and not be in Europe or the United Kingdom to participate. Descriptive and thematic analysis was used to analyze the results. Results: Twenty-one parents, 18 from the United States and three from Canada, participated. The age of diagnosis ranged from two to 19 years old. The official diagnosis took up to 30 doctors and 16 years. Most were extremely dissatisfied with the support they received from health professionals. Nearly all had to miss work because their child(ren) was too sick to go to school (90.5%), and half reported a very negative impact on their family (52.4%). Over half participants reported feeling anxious, fearful, worried, distressed, hopeless, and helpless in the last 7 days. Themes identified related to the strain on the whole family, children losing out on their childhood, mental/emotional strain, and recommendations for parents, providers, and schools. Conclusions: Parents of children with chronic Lyme struggle with the emotional turmoil that the disease has on their child(ren) and family dynamics. More resources and support are needed for parents to navigate this disease. Healthcare providers and schools must be educated to support this population better.
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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 | 0.004 | 0.012 |
| 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 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 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".