Understanding young persons' experiences through healthcare transition. A qualitative study.

Abstract

During adolescence, the care for adolescents and young adults (AYAs) with chronic conditions is expected to transfer from a pediatric to adult setting. Up to 40 % of AYAs experience a disruption in medical care access after their transfer. To mitigate this, a gradual implementation of interventions focusing on positive health behaviors is desirable. Currently, the majority of such interventions are designed for complex disease-specific chronic conditions, focusing primarily on pre-transfer intervention strategies. This study aims to provide an in-depth understanding of AYAs with mild chronic conditions' experiences throughout the stages of healthcare transition. A qualitative study was conducted using semi-structured interviews, complemented by photovoice. Study participants were AYAs, 15-21 years old, diagnosed with asthma, type 1 diabetes, and/or obesity, and were either facing the upcoming transfer or had already experienced the transfer to adult care. Interview and image data were thematically analyzed using NVivo. A total of 18 AYAs (M_age=18 years) participated and a total of 39 photographs were acquired. Five themes were identified, with transition being an individual process as the overarching theme. Additional themes were: setting the expectations, wanting a voice in transition, trust is key and the importance of a support system. Healthcare transition experiences are overarching across different chronic conditions. The current study highlights the need for continuity of care in healthcare transition, by providing an overview of insights pre-, peri- and post-transfer. Complementary, photovoice was applied as a participatory method. Overall, healthcare transition cannot be approached as a one size fits all, with AYAs advocating for an individualized transition program, tailored to their needs.