A Socioecological Approach to Support the Transition to Adult Care for Youth With Medical Complexity
Family Perspectives and Recommendations
Bibliographic Data
| ID | 19507939 |
|---|---|
| Authors | Lin Li (0000-0003-2896-7988, School of Nursing McMaster University Hamilton Ontario Canada, corresponding author), Nancy Carter (0000-0002-4506-7167, School of Nursing McMaster University Hamilton Ontario Canada), Jan Willem Gorter (0000-0002-3012-2119, University Medical Center Utrecht Utrecht The Netherlands), Linda Till (School of Nursing McMaster University Hamilton Ontario Canada), Marcy White (School of Nursing McMaster University Hamilton Ontario Canada), Patricia H Strachan (0000-0003-3121-4442, School of Nursing McMaster University Hamilton Ontario Canada) |
| Year | 2025 |
| Volume | 28 |
| Issue | 1 |
| Pages | e70077-e70077 |
| Publication date | 2025-02-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Health Expectations (JOURNAL) |
| Journal identifiers | ISSN: 1369-6513 • E-ISSN: 1369-7625 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/hex.70077 |
| PMID | 39737625 |
| OpenAlex | W4405884777 |
| Language | EN |
| References cited | 63 |
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
Adult care · Developmental psychology · Health care · Political science · Young adult · Adolescent and Pediatric Healthcare · Childhood Cancer Survivors' Quality of Life · Healthcare Policy and Management · Psychology
Children With Medical Complexity
Consolidated criteria for reporting qualitative research (Coreq)
Reflecting on reflexive thematic analysis
An empirically based conceptual framework for fostering meaningful patient engagement in research
How and why should we engage parents as co‐researchers in health research? A scoping review of current practices
Three Approaches to Qualitative Content Analysis
| Citation velocity | historical |
|---|---|
| Highly cited | No |