Christina Dery

MRP: Youth Healthcare Transitions: Supporting Gradual and Individualized Role and Responsibility Shifts

Youth healthcare transition is described as the movement of youth from paediatric to adult care services. The systems are not optimized for gradual and seamless shifts, creating challenges in continuity, access, and quality of care. A key to transition is preparing caregivers and youth for the adult world through training and modelling adult roles and responsibilities, while providing developmentally appropriate and continuous care. Caregivers and youth struggle with letting go of old RRs and taking on new ones. How and when to encourage these shifts is often unclear and dependent on individual needs, expectations, and future goals. Support is needed to help caregivers and youth transition together and build capacity for autonomy and independence. Guided by design thinking, qualitative (Semi-structured interviews, online asynchronous activities) and participatory design methods (online co-design, online feedback session) were used to engage caregivers, young adults, and healthcare workers to gain a deeper understanding of their experiences, expectations, challenges, and needs for support throughout transition to adult care as it relates to role and responsibility shifts.Results point to the need for engaging caregivers, youth, and healthcare workers in the preparation, planning, and training phases of transition to improve clarity of process, and awareness of roles and responsibilities, and expectations. Strategic approaches for RR transitions are needed to provide individualized and gradual plans to alleviate the emotional toll of abrupt changes, integrate individual and relational factors, and promote connection and partnership. An integrated transition program, “My Marathon,” is proposed for preparation, planning, tracking, and training through team-based educational activities, goal setting, and competency building.This study highlights the human and quality of care impacts and needs for caregivers and youth in transition. Ensuring that youth and caregivers are supported and provided resources to define and prepare for their future is essential in enabling caregivers and youth with chronic conditions and disabilities to thrive and not simply exist.For a summary of the study and 'My Marathon' program, see PDFs for a report summary and interactive report.

“‘My Marathon’ provides a strategic program framework for supporting users through digital means to effectively track and plan in an iterative manner. This allows for live readiness check ins and system alerts to provide clarity of where they are at, where they are going, and how to get there. Caregivers and youth are not often transitioned together. This program offers an opportunity to navigate the process alongside each other and while truly targeting their individual needs. ”