Growing Up With Congenital Heart Disease: A Qualitative Research Study of Parents’ and Clinicians’ Experiences and Perspectives
Bibliographic record
Abstract
Background: Families of children with congenital heart disease (CHD) may experience a range of challenges, such as interactions with the medical system, parental stress, and the child's physical activity (PA) participation. The aim of this study is to explore how those with CHD and their families experience childhood based on parents' and clinicians' experiences and perspectives. The ultimate goal is to identify lacking supports (if any) and when children and their parents may be most amendable to receive them. Methods: We recruited parents/guardians of children with CHD and clinicians involved in care provision for children with CHD. Participants completed life story interviews, with key events from parent/guardian interviews mapped to a timeline. Data were analysed using reflexive thematic analysis. Results: Twelve parents of 11 children with CHD, with diagnoses spanning from mild to complex, and 12 clinicians (42% paediatric cardiologists, 33% nurses, and 25% other) were interviewed. Three themes were identified: (1) overwhelmed-the relationship between parents and the health care system, (2) trauma and resilience-the emotional side to raising a child with CHD, and (3) PA … more than just fun. Subthemes explored challenges of education, communication, and living away from the hospital, traumatic experiences, the need for parental support, different approaches to PA counselling, providing role models, barriers to successful PA promotion, and tools for improvement. Conclusions: This study highlights the need for changes to how and when information is communicated to families of children with CHD and an increase in the number and types of support mechanisms available.
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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 | 0.021 | 0.039 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.010 | 0.009 |
| Scholarly communication | 0.005 | 0.006 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.002 | 0.004 |
| 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".