What If? Incorporating the Voices of Those with Lived Experience to Change the Focus of Fetal Alcohol Spectrum Disorder Research
Bibliographic record
Abstract
How would our understanding of fetal alcohol spectrum disorder (FASD) be different if FASD research was done in collaboration with individuals with lived experience? We speculate that there would be a better balance between basic science and applied research, focusing on effective interventions and strengths. As members of the Canada FASD Research Network Family Advisory Committee and the Adult FASD Expert Collaboration Team, we provide lived experience perspectives on FASD research and assist in knowledge translation of research results. This article, written by individuals with both in-home and in-body lived experience, in collaboration with researchers, explores the importance and unique contributions of participatory approaches in broadening and shifting the focus of FASD research. We use the term “in-body” to describe the experience of individuals with FASD, and the term “in-home” refers to the experience of those who live with individuals with FASD such as caregivers, siblings, and spouses. The collaboration between researchers and people with lived experience has not only expanded the scope of FASD research, but has also helped to disseminate the information obtained through research into the hands of those who need it most: individuals with FASD and their caregivers, frontline service providers, and FASD policy makers. We believe that participatory research with individuals with lived experience will lead to the development of more effective intervention strategies, encourage strengths and resilience, and facilitate better outcomes and an enhanced feeling of support from the FASD research community for individuals living with FASD. This will, in turn, identify successes and reduce stigmatization for individuals with FASD and their caregivers.
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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 | 0.067 | 0.090 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.002 | 0.002 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.015 | 0.032 |
| Scholarly communication | 0.021 | 0.032 |
| Open science | 0.003 | 0.019 |
| Research integrity | 0.008 | 0.014 |
| Insufficient payload (model declined to judge) | 0.007 | 0.002 |
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".