LEFT IN THE DARK, YET THE KEY TO SUCCESS: A PATIENT-LED SCOPING REVIEW OF PARENTAL NEEDS AND PERSPECTIVES SURROUNDING THE HEALTHCARE TRANSITION OF CHRONICALLY-ILL ADOLESCENTS AND YOUNG ADULTS

Abstract BACKGROUND The healthcare transition (HCT) from pediatric to adult care represents a pivotal juncture for chronically ill adolescents and young adults (AYAs) and parents of these transition-aged youth. During this time, AYAs are more prone to psychological distress, treatment nonadherence, and care discontinuation, which can significantly worsen their symptom burden, and inadvertently increase associated healthcare costs and utilization. Traditionally, parents possess an intimate understanding of their child’s medical history, treatment regimens, and individualized needs. Yet, the HCT experiences of parents remain markedly underexplored, despite their potential to be positioned as a critical resource for promoting successful HCTs, and mitigating transition-related adverse health outcomes (e.g., emergency visits, hospitalizations) among AYAs. METHODS This review, led by a group of patient and family partners affected by inflammatory bowel disease (IBD), followed the Joanna Briggs Institute guidelines for evidence synthesis, PRISMA-ScR Checklist, and GRIPP2-Short Form. Ovid MEDLINE, CINAHL, PsychInfo, Embase, and Web of Science were searched until Dec 2024. Extracted data from English-language, peer-reviewed studies included parental experiences, barriers, support needs, and preferences during HCTs. RESULTS In total, 54 studies were included in the review. Parents emphasized the emotional and psychological strain of shifting roles during HCTs as they balanced their need to be actively engaged in their child’s care, while nurturing independence. Reported barriers to parental preparedness included limited access to formal transition education, minimal emotional support, and challenges navigating logistical burdens (e.g., changes in insurance coverage and unfamiliarity with adult care). Findings suggest that supporting parents during HCTs requires actively involving them in transition planning, offering early and joint consultations with pediatric and adult care providers, ensuring the availability of peer-parent and community support opportunities, and broader implementation of coordinated transition programs led by dedicated transition staff. CONCLUSION Our findings point to a critical gap in the uptake of parental perspectives in the development of tailored transition support and resources. Strengthening parental preparedness during HCTs may expectedly lower transition stress and anxiety among parents and caregivers, and further reinforce their ability to more effectively support their own and their child’s transition to adult care. Future Directions This review is part of an innovative, national multi-method patient-led study called PROACT-IBD, which will help make informed recommendations and guide the use of narrative medicine to translate parents’ lived experiences into evidence-based interventions to advance IBD transition care.