Untold stories: A qualitative investigation of patient and family experiences with congenital diaphragmatic hernia
Bibliographic record
Abstract
BACKGROUND: Patient and family perspectives on CDH are infrequently explored, impairing clinicians' understanding of illness impact on functioning and desired support. We investigated the lived experiences of CDH patients and primary caregivers, including those with neurodevelopmental impairment (NDI), regarding the adequacy of clinical and community support. METHODS: Cross-sectional qualitative study convening focus groups (FGs) to explore CDH patient experiences within our CDH follow-up clinic. Participants >4 years were recruited between December 2023-March 2024. FGs were grouped by language preference, presence of NDI, and clinic graduate status. Virtual FG sessions were assessed using inductive thematic analyses. RESULTS: Twenty-six participants (10 CDH children/12 caregivers/4 clinic graduates) participated among 4 FGs. Thematic analysis revealed 4 themes: experiencing CDH as a caregiver; experiencing CDH as a child; striving for normalcy; and getting the support we need. Caregivers reported shock at CDH diagnosis and during initial hospitalization. Caregiver isolation/distress were common, particularly when physically separated from their newborn. Memories faded with time with parents revealing few long-term effects on their children. While most reported minimal impact, some CDH patients struggled with visible CDH indicators (e.g. scars). Patients expressed a high quality of life despite NDI or co-morbidities. Caregivers were satisfied with clinical support and easy contact but desired interaction with other CDH families for emotional/psychological support. CONCLUSION: This first study on CDH lived experiences revealed high quality of life, despite early challenges. Caregivers valued the CDH clinic for easy access to expert care but desired contact with other CDH families for emotional support. LEVEL OF EVIDENCE: Level II (prospectively collected data, retrospective analysis).
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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 | 0.012 | 0.046 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.003 |
| Science and technology studies | 0.019 | 0.013 |
| Scholarly communication | 0.008 | 0.009 |
| Open science | 0.004 | 0.012 |
| Research integrity | 0.004 | 0.008 |
| Insufficient payload (model declined to judge) | 0.005 | 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".