A Socioecological Approach to Support the Transition to Adult Care for Youth With Medical Complexity: Family Perspectives and Recommendations
Bibliographic record
Abstract
INTRODUCTION: The transition from paediatric to adult health care (i.e., 'health care transition') poses many challenges for youth with medical complexity (YMC) and their families. YMC need specific approaches to supporting transition, tailored to individual youth and family contexts. In this study, we examine the contextual factors influencing families' transition experiences and describe their recommendations for improving the experience. METHODS: We conducted a qualitative explanatory case study in Ontario, Canada. We completed 21 interviews with 17 participants (11 mothers, 2 fathers, 2 YMC, 2 siblings) from 11 families of YMC. Six YMC (55%) were under 18 years of age (pre-transfer) and five (45%) were aged 18 years and older (post-transfer). Analytic approaches included reflexive thematic analysis and directed content analysis. FINDINGS: Participants described how the interplay of personal and environmental factors impacted their transition experiences. Recommendations for health care providers focused on providing instrumental and psychological support, advocacy and care continuity. Families expressed a need for better access to information and support from primary care providers. System-level recommendations included streamlining transition processes, improving adult health care services and expanding community supports. A socioecological model is presented to guide health care providers and decision makers in assessing and tackling the challenges faced by YMC and their families during transition. CONCLUSION: Findings highlight the complexity and scope of issues surrounding the transition to adult care for YMC in Ontario, with evidence of major gaps in services across multiple sectors and settings. Ongoing efforts are needed to move evidence into practice and advocate for more equitable and responsive care for YMC during the transition and beyond. PATIENT OR PUBLIC CONTRIBUTION: The research team included two parent co-researchers with lived experience, who contributed to protocol refinement, funding acquisition, recruitment, findings interpretation and ongoing knowledge translation efforts.
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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 | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.002 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| 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".