Is Narrative Storytelling Ethical to Use to Educate the Public about Living Donation? Transplant Professionals Weigh In
1Division of Bio-behavioral Medicine, Medical University of South Carolina, Charleston, SC, 2Division of Nephrology, UCLA School of Medicine, Los Angeles, CA
Meeting: 2019 American Transplant Congress
Abstract number: C126
Session Information
Session Name: Poster Session C: Kidney Psychosocial
Session Type: Poster Session
Date: Monday, June 3, 2019
Session Time: 6:00pm-7:00pm
Presentation Time: 6:00pm-7:00pm
Location: Hall C & D
*Purpose: Recent studies suggest that integrating health information through narrative stories can improve understanding of complex health conditions in diverse populations, especially those with low health literacy. With no empirical research on the potential benefit of narrative storytelling in renal disease and living donor kidney transplant (LDKT), concerns emerge that narrative storytelling could result in sharing of medical inaccuracies, increased pressure to become living donors, and disclosure of protected health information (PHI).
*Methods: We asked 54 storytellers (27 living donors; 20 LDKT recipients; 4 family/friends; 3 others) to share their experience related to LDKT by filming their stories using storytelling capture software. Storytellers were given unique prompts to help share stories based on their involvement in LDKT (e.g., recipient, family, donor). They shared their motivations, benefits, risks, and changes in their lives related to LDKT. Four transplant professionals, including 3 psychologists and 1 physician, conducted ethical reviews of the videos to identify the presence of PHI, medical inaccuracies, pressure in stories, and foul language.
*Results: Results of the ethical review revealed that 70% of stories had at least one type of PHI content revealed, mainly about the storytellers themselves (70%) (Table 1). Few had medical inaccuracies (8%) (e.g., reported improvement in donor memory after donation). Seven storytellers (11%) were assessed to be pressuring the listeners to donate. One story contained foul language.
*Conclusions: Although storytellers who have experience with LDKT provide real-life experiences to others, there are some practical and ethical concerns for their use in medical settings. Transplant professionals concluded that generally storytellers act in an ethical manner, but may need coaching regarding ethical concerns. A careful vetting and editing of stories can ensure ethical and accurate use of narrative storytelling prior to being released for educational purposes.
To cite this abstract in AMA style:
Balliet W, Holland-Carter L, Maurer SN, Salas MP, Anderson CS, Ranasinghe ON, Waterman AD. Is Narrative Storytelling Ethical to Use to Educate the Public about Living Donation? Transplant Professionals Weigh In [abstract]. Am J Transplant. 2019; 19 (suppl 3). https://atcmeetingabstracts.com/abstract/is-narrative-storytelling-ethical-to-use-to-educate-the-public-about-living-donation-transplant-professionals-weigh-in/. Accessed May 13, 2025.« Back to 2019 American Transplant Congress