Transition of Care From Pediatric to Adult Services for Patients With Anorectal Malformations: A Qualitative Study
Leila Hartford, Niveshni Maistry, Giulia Brisighelli, Juan ScribanteABSTRACT
Background
Little is known about how patients with anorectal malformations (ARMs), their caregivers and healthcare providers perceive and experience transition from pediatric to adult care (transition of care) in low‐ and middle‐income countries. This study aimed to explore the perceptions and experiences of young adults, adolescents, their caregivers, and healthcare providers regarding transition of care, as well as their perceptions of an ideal transition of care at the Johannesburg Pediatric Colorectal Clinic.
Methods
A qualitative, exploratory study was conducted employing rich pictures. A workshop was held for each of the four stakeholder groups. Participants were asked to draw a rich picture illustrating their perceptions and experiences of the transition of care, followed by a second picture depicting the ideal transition of care. Data were analyzed using Braun and Clarke's thematic analysis.
Results
Four overarching themes were identified: (1) Born to shine —living with ARM as a lifelong condition that shapes, but does not define, identity; (2) Golden gloves —pediatric services as trusted, emotionally safe spaces, contrasted with fear and uncertainty regarding adult care; (3) Growing up, letting go —transition experienced as both developmental progression and relational loss; and (4) Overwhelmed joint passion —system fragmentation, limited adult expertise in congenital colorectal conditions, poor information transfer, and reliance on informal pediatric workarounds. Transition of care was experienced as a fragile, relational and system‐level process rather than a discrete transfer event. It was marked by the loss of trusted pediatric relationships, uncertainty regarding adult expertise, and fragmented information transfer. These experiences shaped participants' perceptions of an “ideal transition” as one that is relationally anchored, developmentally appropriate, and coordinated across services. Participants identified feasible, low‐resource strategies, including: adolescent‐focused clinics, joint pediatric adult consultations to build trust, identifiable adult “champions,” and structured information‐handover tools.
Conclusion
Co‐designed transition pathways offer a pragmatic opportunity to strengthen lifelong care for patients with ARMs in resource‐constrained settings.