10 Parental perspectives on the health and development of their child with surgical congenital cardiopathy
Bibliographic record
Abstract
Abstract Background Many paediatric centers now offer neurodevelopmental follow-up for children with surgical congenital heart disease (CHD). These patients undergo multiple procedures, extended hospital stays, and increased risks of adverse outcomes. Similar to neonatal follow-up, cardiac follow-up programs use validated assessments and physical exams to aid early detection and intervention. However, parental perspectives regarding their child’s outcomes and needs have not been explored. Objectives To examine parental perspectives about the health and development of their child with surgical CHD Design/Methods Over the course of 2023 and 2024 in a single academic center, parents of children of preschool age with surgical CHD presenting for follow-up were interviewed. They were asked two questions: “In general, how would you rate the physical health of your child with congenital heart disease, using the scale below: 0 very poor to 10 excellent?” and “If you could improve up to 2 things about your child's health and/or neurodevelopment, what would they be?” Responses were analyzed using mixed methods. Results 100 answered the questionnaire On average, parents rated their child’s physical health to be 9/10 (range 3-10/10, median 9/10). Main themes invoked about areas for improvement were developmental outcomes (57%): “for him to meet the typical milestones- grasp and eventually speak”; cardiovascular health and overall medical fragility (55%):“ I want him to improve his breathing capacity”; and never having CHD (21%): “that she wasn't born with the heart defect she was born with”. Twenty-four percent did not wish to improve anything: “I think he is perfect just the way he is”. Recurrent sub-themes for improvement were: language/communication (26%) :” improving her speech and understanding of communication”, motor (16%) and cognitive/behavioral (13%). As for physical health, the main area for improvement were heart and lung function (28%), growth and nutrition issues (14%) and being prone to infection (4%). Conclusion Parental perspective on the health of their child with surgical CHD is generally positive. Main areas of concern are development, cardiac and respiratory health; although development is prioritized during cardiac follow-up programs . Parents also discuss the importance of nutrition and gastro-intestinal health. These perspectives help inform healthcare professionals on how to tailor follow-up services to families’ needs.
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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 | 0.007 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| 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".