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Record W46441505

Consenting to pediatric critical care research: understanding the perspective of parents.

2013· article· en· W46441505 on OpenAlexaffabout
Margot Thomas, Kusum Menon

Bibliographic record

VenuePubMed · 2013
Typearticle
Languageen
FieldMedicine
TopicEthics in Clinical Research
Canadian institutionsChildren's Hospital of Eastern Ontario
Fundersnot available
KeywordsInformed consentGuardianLegal guardianContext (archaeology)MedicineQualitative researchParental consentPediatric intensive care unitFamily medicinePerspective (graphical)PsychologyNursingAlternative medicine
DOInot available

Abstract

fetched live from OpenAlex

UNLABELLED: Pediatric clinical research is dependent on obtaining consentfrom the parents or legal guardian of eligible patients. Little is known about parents' perspectives and the process by which they make the decision to enroll their child in a pediatric critical care trial. OBJECTIVE: To describe the experience of parents/legal guardians who consented or declined consent for their child to be enrolled in a pediatric critical care research study. Factors that influenced parents' decisions and suggestions for improving and modifying the consent process were explored. METHOD: This study used a qualitative descriptive research design. Seven semi-structured qualitative interviews were conducted with parents who had given or declined consent for their child to participate in a clinical research study while their child was in a pediatric critical care unit in one of two Canadian pediatric teaching hospitals. Parents were interviewed within 48 hours of their child's transfer from the PICU to a hospital ward unit. The interviews were audio recorded, transcribed, and analyzed using a content analysis method. RESULTS: Parental decision-making related to research consent in the context of pediatric critical care is influenced by specific characteristics of the consent encounter (timing, location, and information), parent (emotional state, decision-making style, familiarity with environment, past experience, and personal motivation), child (condition and response to pain/needles) and study (risk, method, burden, and benefit). Parents identified that the timing and ways in which they received information during the consent encounter could be improved. CONCLUSION: Pediatric critical care researchers can improve the parental consent encounter experience by considering how parents perceive the approach to consent for a research trial for their child to balance the need to support parents with the need for participants in pediatric critical care research trials.

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 distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.005
metaresearch head score (Gemma)0.121
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Theoretical or conceptual · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.410
Threshold uncertainty score0.886

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0050.121
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.001
Science and technology studies0.0000.001
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.002
Insufficient payload (model declined to judge)0.0000.000

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.

Opus teacher head0.822
GPT teacher head0.610
Teacher spread0.213 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one teacher head, not a consensus.

Study designTheoretical or conceptual
Domainnot available
GenreEmpirical

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".

Quick stats

Citations22
Published2013
Admission routes2
Has abstractyes

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