Storytelling to Inspire Dialysis Patients to Learn about Living Donor Kidney Transplant

Abstract

Background: Policy changes including the Advancing American Kidney Health initiative and CMS’s ESRD Quality Incentive Program recommend increasing educational initiatives within dialysis centers to increase living kidney donor transplant (LDKT) rates. LDKT education can be challenging in dialysis centers due to limited provider time to educate, patient fears or reluctance to learn about LDKT, and difficulty educating potential living donors. New educational innovations that increase dialysis patient curiosity about pursuing LDKT are needed. Summary: Digital first-person storytelling, or the sharing of narratives by individuals in their own words, is a culturally competent, health literate, patient-driven approach to expanding patient understanding about LDKT that can supplement traditional educational strategies without additional burden for dialysis providers. The Living Donation Storytelling Project is an online digital library of over 150 video stories told by diverse kidney recipients, donors, those in search of a donor, and their family/friends. By honestly discussing how they overcame fears and challenges related to LDKT, these stories address sensitive topics that can be hard for providers to introduce by using easily accessible learning methodology that may better connect with racial/ethnic minorities, scared patients, and patients facing health literacy challenges. Key Messages: Supplementing traditional educational approaches with digital storytelling may help overcome time limitations in educating for busy providers, boost providers’ own knowledge about LDKT, serve as a free supplemental resource for patients, reduce fears and increase self-efficacy about transplant, help more patients to share about transplant with their social networks, and ultimately increase LDKT rates.