550 - Future-Oriented Narratives in Youth with Kidney Transplant — A novel approach to improve self-management

Publication Number: 4538.550

Stacy M. Russell, University of Washington, SEATTLE, WA, United States; Jodi Smith, Seattle Children's, Seattle, WA, United States; Ari H. Pollack, Seattle Children's, Seattle, WA, United States

Background: For youth with end stage kidney disease, kidney transplant offers optimal outcomes for growth, development, and quality of life. However, poor adherence to medical regimens reduces allograft longevity, with the highest rate of graft loss occurring between ages 17-25 years. Although non-adherence is multifactorial, challenges in incorporating adolescents into their own care plans and promoting self-management may adversely affect adherence. The narrative medicine approach of storytelling enables individuals to articulate values, priorities, and decision-making frameworks, which provide insight into crucial factors for transplant management.

Objective: Understand how youth with kidney transplants create future-oriented narratives and how these narratives surface patient values to facilitate self-management and align care with those values.

Design/Methods: We analyzed stories obtained from kidney transplant recipients ages 12 to 21 years, who were asked to tell a story about their future. Through iterative inductive thematic analysis, emergent codes were identified, discussed, and organized into a final framework and then applied to the dataset.

Results: Thirteen youth with kidney transplant created future-oriented narratives, from which we identified four high-level themes: 1) Hope for future, 2) Future visions, 3) Optimism but realism, and 4) Pathways to success (Table 1). All participants used their stories to describe goals and priorities for their future. Some individuals described hopes without concrete plans to achieve them, while others began imagining pathways toward independence in healthcare, finances, and academic pursuits. The four themes appear to represent a progressive series of stages from abstract visions of the future to specific, actionable steps toward goals (Fig. 1).

Conclusion(s): Youth with kidney transplants tell stories about their futures that center on hope and optimism. Understanding how they describe these stories, from abstract hopes to pathways toward independence, reveals opportunities for tailored interventions to facilitate self-management. Providing the opportunity to craft these narratives and incorporating them into clinical encounters may help youth transform aspirations into actionable paths forward, while also cultivating clinician empathy for lived experiences that often go unnoticed. This shared understanding of values and aspirations strengthens therapeutic relationships and enables care that aligns with personal priorities. Storytelling thus becomes a potential method to achieve collaborative, patient-centered care that empowers youth to actively shape their futures.

Table 1. Thematic Coding of Story Excerpts


Figure 1. Building Blocks of Future Narratives in Kidney Transplant
PAS 2026 Figure 1 Russell.1.jpegThe four emergent themes from future-oriented stories told by youth kidney transplant recipients.