Nothing About Us Without Us
Bibliographic record
Abstract
Background and objective Historically, Fetal Alcohol Spectrum Disorder (FASD) research has been conducted on individuals with lived experience rather than with them. This article draws on feedback from workshops with individuals with lived experience, in which a collaborative approach was followed, drawing on patient-oriented and participatory action research methods. We provide an overview of the feedback, including barriers to participation alongside strategies to address these barriers, facilitating meaningful involvement in the research process. The writing team includes those with lived experience and research backgrounds. In addition, we make a distinction between the experience of those with FASD (what is called “in-body lived experience”) and those that have caregiver experience (what is called “in-home lived experience”). By lowering barriers, the goal is to bring in the many different perspectives of those with lived experience. Material and methods A keynote presentation and two workshops were held in 2018 at an international FASD conference bringing together individuals, families, agencies, and researchers. Participants were asked what they required to participate in FASD research more thoroughly. The goal was to understand barriers to participating in FASD research. In the first workshop (n=65), imagined for general conference participants including caregivers, service providers, policymakers, and researchers but primarily attended by caregivers and service providers, participants were asked to rank barriers through a “dotmocracy” process. Dotmocracy (or dot-voting) is a collaborative prioritization technique commonly used in group facilitation. A tally of the number of dots assigned to each barrier by participants was used to rank the importance of the barriers identified. Small groups discussed strategies to address the top 10 barriers. In the second workshop, composed of adolescents and adults with FASD (n=60), the participants were asked to share the obstacles they faced in research as a collaborator or as a research participant and their suggestions for future research area priorities. Results Participants in the first workshop noted core concerns, including the need for financial support, barriers to informed participation, unconscious bias of researchers, lack of a common language, lack of time and support to participate, absence of shared leadership in the research, perceived absence of benefits for participants, lack of accommodation for the unique needs of individuals with lived experience, scarcity of resources to accommodate those needs and insufficient communication on current FASD research projects. The information from individuals with FASD was similar and focused on the unique needs and barriers to fully participating in FASD research either as a collaborator or research participant. For example, participants identified the need for researchers to accommodate language comprehension differences, memory issues, anxiety, and sensory issues experienced by individuals with FASD. In addition, they identified barriers to participation such as finances, lack of transportation, insecure housing, and childcare demands. Finally, participants noted that FASD is a spectrum disorder and people on all ends of the spectrum need to have a voice. Discussion The workshops provided a wealth of information regarding research areas on which to focus, unique needs and barriers to participation, and their need to have a voice. Research that is attentive to each of these groups’ unique needs will allow for the inclusion of the widest group of individuals that identify as having lived experience relative to FASD. As a result, patient-oriented and participatory action research can be better represented in the field of FASD.
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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 | 0.004 | 0.018 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.010 | 0.012 |
| Scholarly communication | 0.011 | 0.012 |
| Open science | 0.001 | 0.010 |
| Research integrity | 0.004 | 0.010 |
| Insufficient payload (model declined to judge) | 0.083 | 0.042 |
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".