Barriers and supports for Indigenous youth and young adults with childhood- onset chronic health conditions transitioning from pediatric to adult healthcare: a qualitative study
Bibliographic record
Abstract
BACKGROUND: This study examined the experiences of Indigenous youth and young adults with pediatric onset chronic health conditions who had or were about to transition from pediatric to adult healthcare services. Transition is the process by which youth develop the knowledge and self-management skills needed to manage their health condition, ideally beginning around age 12-13 and continuing until the mid-20s. There is a growing body of literature on healthcare transition, but there is an absence of literature on Indigenous youth, who face additional barriers to accessing healthcare relative to non-Indigenous Canadians. The primary objective of this study was to identify the supports and barriers for Indigenous youth with childhood-onset chronic health conditions transitioning from pediatric to adult healthcare services. METHODS: The research was done in the province of Alberta, Canada, in collaboration with a Community Advisory Committee comprised of Indigenous healthcare providers, Elders and Knowledge Keepers and guided by a community-based participatory research approach. Semi-structured qualitative interviews (n = 46) were conducted with Indigenous youth, caregivers, and healthcare providers. There were three Talking Circles, two for youth (9 participants) and one for caregivers (6 participants). Three research assistants coded the transcripts thematically using NVivo. The key findings were presented to the Community Advisory Committee for feedback to validate the interpretation of the qualitative data. RESULTS: The thematic findings include: (1) systemic inequalities exacerbate gaps in healthcare; (2) intergenerational trauma created unique barriers for Indigenous youth; (3) long-term relationships with care providers as a protective factor; (4) the incorporation of Indigenous worldviews into healthcare services to aid transition; and (5) assuming new responsibilities as an adult. The participants provided recommendations to improve healthcare service delivery including the need for Indigenous transition supports in community and improving education for healthcare practitioners about transition and Indigenous worldviews. CONCLUSION: This study demonstrates the complexity of the transition experience for Indigenous youth with pediatric onset chronic health conditions. The identified barriers to successful transition could be addressed through systems level changes and the development of Indigenous specific transition support services. Such approaches need to be Indigenous-led and incorporate Indigenous culture, language, and teachings.
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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 | 0.007 | 0.006 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.002 |
| Science and technology studies | 0.014 | 0.007 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.002 | 0.006 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.003 | 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".