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

Abstract

<b><i>Background:</i></b> 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. <b><i>Summary:</i></b> 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. <b><i>Key Messages:</i></b> 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.

Using Focus Groups to Understand Dialysis Staff Perspectives on Delivering Transplant Education

“…Previous research has also suggested the utility of video for those less ready to pursue kidney transplantation. 13 Despite positive comments on the value of online video, dialysis staff in our study had not utilized available online videos and had only reported historic use of DVDs. In other studies, educational video showing at dialysis centers has also been low, between 11% and 20%.…”

“…The self-sustaining nature of interventions that accommodate staff capacity and workloads has been recommended previously, 8 including use of themed videos to support providers with less transplant expertise or comfort with education. 13 We shed light on the importance of a short introductory video to enable dialysis staff to engage reluctant learners. Previous research has also suggested the utility of video for those less ready to pursue kidney transplantation.…”

“…[10][11][12] A variety of educational videos developed by transplant researchers are available online. 10,[12][13][14] Individuals with end-stage kidney disease have indicated a willingness to learn transplant information from videos 15 and have rated educational videos highly. 12,[16][17][18] Video education may equip a broader range of dialysis staff with the tools to deliver education.…”

Living Kidney Donation Stories and Advice Shared Through a Digital Storytelling Library: A Qualitative Thematic Analysis

“…Although ventures into this topic date back to the early 2000s, 33 until recently, few studies have examined the content being shared about the transplant experience. 10 , 29 , 34 Educationally beneficial information provided in an accessible format to diverse communities can offer insight into what increases trust and improves connection with hard-to-reach patient populations. 28 …”

23rd International Conference on Dialysis: Advances in Chronic Kidney Disease 2021 (April 20–23, 2021, USA)

“…The review article by Wood et al [9] provides novel educational strategies to motivate dialysis patients to learn about living donor kidney transplantation and help lessen the burden on dialysis providers which usually have insufficient resources in this field. The authors describe the benefit of Digital Storytelling for health education which can be done affordably, using low-cost technology that most patients are already familiarized with.…”