93 Vulnerability, connections and transformation: positive and negative impacts of complex congenital heart disease on families
Bibliographic record
Abstract
Abstract Background Children with congenital heart disease requiring surgery are at increased risk for adverse health and developmental outcomes. The negative impacts of congenital heart disease have been investigated: families often experience anxiety, depression, and traumatic stress. However, positive impacts have not described, leaving an unbalanced understanding of the reality of families. Objectives To explore parental perspectives regarding the impacts - both positive and negative - of complex congenital heart disease on their life. Design/Methods Parents of children 1-4 years old with surgical CHD that presented for cardiology clinic follow-up at a single center in 2023-2024 were interviewed. They were asked about the impacts of their child’s cardiopathy on their life and their family’s life: positive, negative or both. Through open-ended questions, parents were asked to justify their answers. Responses were analyzed using mixed methods. Results Among parents (n=100), 7% reported only positive impacts, 86% both positive and negative impacts, and 7% only negative impacts. Positive impacts included: personal growth and transformation (57%): ‘It has made us more empathetic’; stronger relationships and connections with family, friends and community (28%): ‘the community is great everyone is going through something and having a positive outlook’; and medical systems (15%): ‘deeper appreciation for what everyone here does on a daily basis’. The main negative themes reported were the trauma of the experience (27%): ‘It definitely took the fun out of the pregnancy and made it traumatic’; ongoing stress and anxiety (34%): ‘the thing that is the most difficult is that there is no end in sight to it’; loss of normalcy (29%): ‘We literally flipped our lives upside down including our jobs, our kids in order to accommodate the heart condition’. Conclusion Parents report both negative and positive impacts when living with a child with complex congenital heart disease. Understanding the challenges faced by families, as well as their sources of positive resilience is important to improve our communication throughout their prenatal, neonatal and follow-up experiences. These perspectives optimize the medical system to decrease negative impacts and harness the potential of positive impacts.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.003 | 0.013 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.004 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.000 | 0.004 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.004 | 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".