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Record W2515754279 · doi:10.1111/hex.12490

How and why should we engage parents as co‐researchers in health research? A scoping review of current practices

2016· review· en· W2515754279 on OpenAlexafffund
Shuoqi Shen, Krissy A.R. Doyle‐Thomas, Lori Beesley, Amir Karmali, Laura Williams, Nadia Tanel, Amy C. McPherson

Bibliographic record

VenueHealth Expectations · 2016
Typereview
Languageen
FieldPsychology
TopicFamily and Disability Support Research
Canadian institutionsUniversity of TorontoPublic Health OntarioHolland Bloorview Kids Rehabilitation Hospital
FundersBloorview Research Institute
KeywordsPsychologyCurrent (fluid)Knowledge managementData scienceComputer scienceEngineering

Abstract

fetched live from OpenAlex

BACKGROUND: The importance of engaging parents in health research as co-researchers is gaining growing recognition. While a number of benefits of involving parents as co-researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co-researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co-researchers; and (iii) identify gaps in the literature. METHODS: A scoping literature review was conducted using established methodology. Four research databases and one large grey literature database were searched, in addition to hand-searching relevant journals. Articles meeting specific inclusion criteria were retrieved and data extracted. Common characteristics were identified and summarized. RESULTS: Ten articles were included in the review, assessed as having low-to-moderate quality. Parent co-researchers were engaged in the planning, design, data collection, analysis and dissemination aspects of research. Structural enablers included reimbursement and childcare. Benefits of engaging parent co-researchers included enhancing the relevance of research to the target population, maximizing research participation and parent empowerment. Challenges included resource usage, wide-ranging experiences, lack of role clarity and power differences between parent co-researchers and researchers. Evaluation of parent co-researcher engagement was heterogeneous and lacked rigour. CONCLUSIONS: A robust evidence base is currently lacking in how to effectively engage parent co-researchers. However, the review offers some insights into specific components that may form the basis of future research to inform the development of best practice guidelines.

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 imitation

Not 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.

metaresearch head score (Codex)0.123
metaresearch head score (Gemma)0.298
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch
Consensus categoriesnone
DomainCandidate signal: Methods · Consensus signal: none
Study designCandidate signal: Systematic review · Consensus signal: Systematic review
GenreCandidate signal: Review · Consensus signal: Review
Teacher disagreement score0.877
Threshold uncertainty score0.649

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.1230.298
Meta-epidemiology (narrow)0.0020.003
Meta-epidemiology (broad)0.0060.006
Bibliometrics0.0270.025
Science and technology studies0.0040.006
Scholarly communication0.0160.020
Open science0.0050.008
Research integrity0.0090.007
Insufficient payload (model declined to judge)0.0030.001

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 head0.851
GPT teacher head0.705
Teacher spread0.145 · 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 source (direct Gemma or distilled Codex), not a consensus.

Study designSystematic review
DomainMethods
GenreReview

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

Citations234
Published2016
Admission routes2
Has abstractyes

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