A Digital Library for Increasing Awareness About Living Donor Kidney Transplants: Formative Study

Abstract

Background It is not common for people to come across a living kidney donor, let alone consider whether they would ever donate a kidney themselves while they are alive. Narrative storytelling, the sharing of first-person narratives based on lived experience, may be an important way to improve education about living donor kidney transplants (LDKTs). Developing ways to easily standardize and disseminate diverse living donor stories using digital technology could inspire more people to consider becoming living donors and reduce the kidney shortage nationally. Objective This paper aimed to describe the development of the Living Donation Storytelling Project, a web-based digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we aimed to describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of participating storytellers, and the frequency with which any ethical concerns about the content being shared emerged. Methods This study invited kidney transplant recipients who had received LDKTs, living donors, family members, and patients seeking LDKTs to record personal stories using video capture technology by answering a series of guided prompts on their computer or smartphone and answering questions about their filming experience. The digital software automatically spliced responses to open-ended prompts, creating a seamless story available for uploading to a web-based library and posting to social media. Each story was reviewed by a transplant professional for the disclosure of protected health information (PHI), pressuring others to donate, and medical inaccuracies. Disclosures were edited. Results This study recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the postsurvey, 105/137 (76.6%) were white and 99/137 (72.2%) were female. They spent 62.5 min, on average, recording their story, with a final median story length of 10 min (00:46 seconds to 32:16 min). A total of 94.8% (130/137) of storytellers were motivated by a desire to educate the public; 78.1% (107/137) were motivated to help more people become living donors; and 75.9% (104/137) were motivated to dispel myths. The ease of using the technology and telling their story varied, with the fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. PHI, most commonly surnames and transplant center names, was present in 62.9% (85/135) of stories and was edited out. Conclusions With appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, web-based storytelling platforms may be a cost-effective and convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors.

Understanding Patients’ and Living Donors’ Kidney Paired Donation Educational Experiences and Recommendations for Improvement

“…19 This study's results align with other research about LDKT decision-making, showing that many donors pursuing KPD also decide quickly, almost instantaneously, to participate without systematically processing all the information. 20,21 There is much more to understand when deciding whether to pursue KPD, with transplant coordinators previously reporting that KPD education is more logistically complex to explain. 12 Results of this study support that patients also find the logistics of KPD difficult to understand.…”

Investigating Ethnic Disparity in Living-Donor Kidney Transplantation in the UK: Patient-Identified Reasons for Non-Donation among Family Members

“…The use of "live donor champions" may also enable discussions to start: in this approach, a friend or family member is trained to undertake an advocate role, sharing information on the patient's behalf with the patient's wider social network [43]. Other approaches that may overcome "cultures of silence" include people with kidney disease, transplant recipients and donors sharing their experiences on an open web-platform such as healthtalk.org (http://healthtalk.org) and the living donation storytelling project (https://explorelivingdonation.org/) [44]. However, such approaches need to be formally evaluated for effectiveness.…”

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

“…Recognizing the potential of storytelling for transplant education, we designed and built a digital storytelling library of LDKT stories from a diverse set of real living donors, recipients, and their family and friends [30]. Over 80% reported that they were motivated by a desire to educate the public about living donation, show people how living donation can make a difference for both the recipient and donor, and help others looking for more information about living donation.…”