ArticleHealth expectations : an international journal of public participation in health care and health policy2025
A Socioecological Approach to Support the Transition to Adult Care for Youth With Medical Complexity: Family Perspectives and Recommendations.
Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
introductionThe 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.
methodsWe 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.
findingsParticipants 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.
conclusionFindings 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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