A177 RESILIENCE AND EMPOWERMENT OF INDIGENOUS PERSONS LIVING WITH INFLAMMATORY BOWEL DISEASE: A PHOTOVOICE STUDY FROM CANADA
Bibliographic record
Abstract
Abstract Background There is limited evidence about inflammatory bowel disease (IBD) among Indigenous peoples (Inuit, Métis, and First Nations [FN]). Healthcare utilization inequities between FN and non-FN individuals with IBD have been documented. Aims We aimed to explore the perceptions of FN persons living with IBD, including identifying barriers and facilitators to access healthcare and understanding their expectations of healthcare for IBD. Methods Six FN community members shared their experiences and perspectives about IBD. Four were individuals living with IBD and two were parents of FN persons living with IBD. Participants were asked to make photos in response to: “What is IBD for you?”, “What does it mean to be healthy and unhealthy when living with the diagnosis of IBD?”, “What do you expect when looking for healthcare at a clinic or a hospital?”, and “What are your challenges when accessing care?”. Then, they participated in semi-structured group reflections about their photo selections. Reflexive thematic analysis was utilized to analyze photographs, questionnaires, and reflections. Results The analysis revealed five themes: 1. Diagnosing IBD; 2. Living with IBD; 3. The Health-Sickness Dichotomy; 4. Healthcare Enablers and Barriers; and 5. Advocacy. The 1st theme encapsulates participants’ experiences regarding delays in diagnosis, the tendency of healthcare practitioners to focus on symptoms rather than the underlying disease, and the emotional responses to receiving an IBD diagnosis. The 2nd theme traces participants’ experiences as they navigate a changed reality, confront issues of bodily betrayal, dignity, and resilience. The 3rd theme highlights the contrasts between health and illness as experienced through physical symptoms, dietary choices, and social interactions. The 4th theme captures participants’ experiences within the healthcare system, including their expectations, positive encounters, and challenges such as inadequate knowledge among some healthcare providers, negative interactions, finding adequate language and use of metaphors to speak about a stigmatizing illness, and the use of humor as a coping mechanism and a barrier. The 5th theme reflects participants’ experiences advocating for themselves or relying on supportive networks to advocate on their behalf. Participants recognized the value of patients and advocates as experts in navigating their health journeys. Conclusions Drawing on participants’ lived experiences, this study highlights the gaps in the healthcare system faced by Indigenous patients living with IBD, while revealing potential solutions to enhance their healthcare experiences and outcomes. Funding Agencies SHRF-SCPOR
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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 | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.018 | 0.003 |
| Scholarly communication | 0.003 | 0.001 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.005 | 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 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".