JMIR Publications

ABSTRACT

Background:

Most of the general public often has never met a living kidney donor, let alone considered if 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 transplant (LDKT). 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 manuscript describes the development of the Living Donation Storytelling Project, an online digital library of living donation narratives from multiple audiences using video capture technology. Specifically, we describe the theoretical foundation and development of the library, a protocol to capture diverse storytellers, the characteristics and experiences of storytellers participating, and the frequency with which any ethical concerns about content being shared emerged.

Methods:

We 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 answer questions about their filming experience. The digital software automatically spliced together responses to open-ended prompts, creating a seamless story available for upload to an online library and posting to social media. Each story was reviewed by a transplant professional for disclosure of protected health information (PHI), pressuring of others to donate, and medical inaccuracies. Disclosures were edited out.

Results:

We recruited diverse storytellers through social media, support groups, churches, and transplant programs. Of the 137 storytellers who completed the post-survey, 105 (77%) were white and 99 (72%) were female. They spent 62.5 minutes, on average, recording their story, with a final median story length of ten minutes (00:46 sec – 32:16 min). Ninety-five percent (130 out of 137), were motivated by a desire to educate the public, 107 (78%) were motivated to help more people become living donors, and 104 (76%), were motivated to dispel myths. Ease of using the technology and telling their story varied, with fear of being on film, emotional difficulty talking about their experiences, and some technological barriers being reported. Protected Health Information, most commonly surnames and transplant center names, was present in 63% of stories and was edited out.

Conclusions:

With appropriate sensitivity to ensure diverse recruitment, ethical review of content, and support for storytellers, online storytelling platforms may be a cost-effective, convenient way to further engage patients and increase the curiosity of the public in learning more about the possibility of becoming living donors. Clinical Trial: not applicable