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Record W4392606698 · doi:10.1016/j.gimo.2024.101379

P480: Parent and healthcare personnel perspectives on challenges to family-centered care for children with inherited metabolic diseases: A qualitative analysis

2024· article· en· W4392606698 on OpenAlexaff
Andrea Chow, Guylaine D’Amours, Isabel Jordán, Nicole Pallone, Maureen Smith, Pranesh Chakraborty, Zobaida Al‐Baldawi, Julie Paradis, Jamie Brehaut, Alicia Chan, Eyal Cohen, Sarah Dyack, Jane Gillis, Sharan Goobie, Ian D. Graham, Cheryl R. Greenberg, Jeremy Grimshaw, Robin Z. Hayeems, Michal Inbar‐Feigenberg, Shailly Jain‐Ghai, Sara D. Khangura, Jennifer MacKenzie, Nathalie Major, John J. Mitchell, Stuart G. Nicholls, Amy Pender, Murray Potter, Chitra Prasad, Natalya Karp, Andreas Schulze, Komudi Siriwardena, Kathy N. Speechley, Sylvia Stöckler, Yannis Trakadis, Clara van Karnebeek, Jagdeep S. Walia, Kumanan Wilson, Brenda J. Wilson, Andrea C. Yu, Beth K. Potter

Bibliographic record

VenueGenetics in Medicine Open · 2024
Typearticle
Languageen
FieldBiochemistry, Genetics and Molecular Biology
TopicMetabolism and Genetic Disorders
Canadian institutionsMemorial University of NewfoundlandQueen's UniversityBC Children's HospitalMcMaster UniversityWestern UniversityUniversity of TorontoMontreal Children's HospitalHealth Sciences CentreOttawa HospitalUniversity of ManitobaHamilton Health SciencesDalhousie UniversitySickKids FoundationUniversity of AlbertaChildren's Hospital of Eastern OntarioHospital for Sick ChildrenKingston Health Sciences CentreUniversity of Ottawa
Fundersnot available
KeywordsHealth careQualitative researchFamily centered carePsychologyMedicineNursingSociologyPolitical scienceSocial science

Abstract

fetched live from OpenAlex

Family-centered care is a concept that engages children and families as integral members of health care teams and is a marker of high-quality health care systems. There is limited evidence about the specific aspects of positive or negative experiences with healthcare that are most important to children with rare inherited metabolic diseases (IMDs) and their families. Understanding family perspectives about these care experiences is important for identifying gaps in healthcare that could be targeted for improvement.

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)0.000
metaresearch head score (Gemma)0.000
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: Qualitative
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.271
Threshold uncertainty score0.862

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0000.000
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0000.000
Science and technology studies0.0000.000
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.000
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 head0.049
GPT teacher head0.395
Teacher spread0.346 · 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.

The models applied no category: nothing in the taxonomy fit this work.
Study designQualitative
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

Citations0
Published2024
Admission routes1
Has abstractyes

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