FP784CHILD AND PARENTAL VIEWS ON COMMUNICATION AND DECISION-MAKING IN PEDIATRIC CHRONIC KIDNEY DISEASE
Bibliographic record
Abstract
INTRODUCTION AND AIMS: Effective communication and shared decision-making improves quality of care and patient outcomes, but can be particularly challenging in pediatric chronic disease as children depend on their parents and clinicians to manage complex healthcare and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision-making. METHODS: Children with CKD (n=34) and parents (n=62) from six centers across six cities in Australia, Canada and the United States participated in 16 focus groups. Transcripts were analyzed thematically. RESULTS: We identified four themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, inadequacy as technicians); (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, empowering participation in children); (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, struggling to voice own preferences); and (4) managing child’s involvement (respecting child’s expertise, attributing ‘risky’ behaviors to rebellion, protecting children from illness burden). CONCLUSIONS: Parents value partnership with clinicians and consider long-term and quality of life implications of their child’s illness. Children with CKD want more involvement in treatment decision-making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable them to become partners in decision-making and prepare them for adulthood. Collaborative and informed decision-making that addresses the priorities and concerns of both children and parents is needed.
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 | 0.010 | 0.018 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.005 | 0.005 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| 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".