78 Asking, listening, understanding: Establishing parent and youth priorities in child health research
Bibliographic record
Abstract
Abstract Primary Subject area Advocacy Background A growing body of literature supports the active involvement of stakeholders in the prioritization and dissemination of evidence-based health care information. However, in child health related research, the perspectives of parents and youth are rarely acknowledged. Objectives To engage parents and youth in identifying and developing priority lists of research topics that are most relevant and important to youth and their families. Design/Methods We engaged parents and youth across Alberta in a modified James Lind Alliance priority setting exercise. Two lists, containing 27 topics were developed and modified in consultation with local parent and youth advisory groups. The respective lists were sent to parents and youth via online surveys. The anonymous surveys asked parents and youth to rank the topics by rating the degree (5-point Likert scale) to which they agreed the topic was a priority for child health research. All topics rated “Agree” or “Strongly Agree” by ≥ 70% of respondents were retained for discussion. Online focus groups (utilizing deliberative dialogue) to discuss priority topics were held with parents and youth, separately. Focus group discussions were analyzed using thematic analysis; resultant themes and subthemes were used to produce representative research questions. These were then sent via a second online survey to all participating parents and youth, who were asked to rank their ‘top 10’ most important child health research topics. Ethics approval was received from our institutional ethics board, and all participants gave informed consent or assent, prior to any data collection. Results Initial surveys were completed by 273 parents and 344 youth. This resulted in 5 highly rated health research topics for parents (behaviour, learning, and developmental disorders; mental health; food, environment and lifestyle; quality of health care; and vaccines) and 4 for youth (brain and nerve health, mental health, quality of health care, and vaccines), respectively. The research questions stemming from four parent (n=12) and six youth (n=21) focus group discussions were ranked in a second survey, completed by 43 parents and 62 youth. Parents’ highest ranked research topic was “effect of screen time on children’s neurodevelopment”, while the highest ranked topic from youth was “early signs of anxiety and depression in children and youth” (Tables 1 & 2). Conclusion Utilizing the knowledge and experience of Albertan parents and youth, relevant lists of priority topics in child health research were developed. These lists highlight the areas where funding and research should be directed to improve child health outcomes and patient care experiences that are important to parents and youth.
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 imitationNot 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.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.011 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.006 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.001 |
| Research integrity | 0.000 | 0.006 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".