True Living Donation Experiences: A Thematic Analysis of Storytelling from Kidney Living Donors
E. Ho1, E. H. Wood2, R. Pines3, L. A. Davis4, S. M. Advani5, A. D. Waterman2
1Terasaki Institute, Los Angeles, CA, 2UCLA David Geffen School of Medicine, Los Angeles, CA, 3Cottage Hospital, Santa Barbara, CA, 4DeSales University, Center Valley, PA, 5National Human Genome Research Institute (NIH), Bethesda, MD
Meeting: 2021 American Transplant Congress
Abstract number: 874
Keywords: Kidney transplantation, Patient education, Psychosocial
Topic: Clinical Science » Kidney » Kidney Psychosocial
Session Information
Session Name: Kidney Psychosocial
Session Type: Poster Abstract
Session Date & Time: None. Available on demand.
Location: Virtual
*Purpose: Personal experiences of living donors (LDs) or recipients (Rs) can motivate more individuals to pursue living donor kidney transplant. After building a library of 160 video stories of patients and LDs, we conducted thematic content analysis to identify common themes and the emotional changes experienced along the LD journey.
*Methods: The 160 storytellers (76% LDs; 24% Rs) of diverse race/ethnicities (55% White; 6% Black; 7% other; and 8% Hispanic) recorded stories using open-ended prompts. Two coders watched each video and coded dimensions of the content participants shared including their emotions, barriers, motivations and personal experiences. Descriptive statistics were run to explore common themes and chi-squared test were run to compare differences based on participant’s emotional status.
*Results: Rs mostly reported they pursued a LD transplant due to its improved outcomes over deceased donation (84%), support from family (64%), and dissatisfaction feeling sick on dialysis (40%). A majority felt gratitude for the transplant (61%). LDs reported motivations to donate to improve someone’s quality of life (42%), family support for donation (47%), concern for the donor’s future health (38%), and gratitude and fulfillment received from donating (47%). As Rs & LDs progressed along the transplant journey their emotions shifted (Fig 1,2). Compared to before surgery, afterwards Rs were more likely to report feelings of happiness (21% vs 29%), relief (8% vs 21%), and hope (3% during kidney failure vs. 8% after surgery). Compared to before donation, LDs were more likely to report happiness (22% vs. 55%), relief (10% vs. 20%), and pride (3% vs 10%) afterwards.
*Conclusions: LD stories captured through a digital library address the emotional and practical challenges they faced as well as the positive outcomes and gratitude they feel now. This realistic and reassuring library can be used to supplement traditional education about LD within medical encounters and through social media campaigns to generate interest in LD.
To cite this abstract in AMA style:
Ho E, Wood EH, Pines R, Davis LA, Advani SM, Waterman AD. True Living Donation Experiences: A Thematic Analysis of Storytelling from Kidney Living Donors [abstract]. Am J Transplant. 2021; 21 (suppl 3). https://atcmeetingabstracts.com/abstract/true-living-donation-experiences-a-thematic-analysis-of-storytelling-from-kidney-living-donors/. Accessed October 15, 2024.« Back to 2021 American Transplant Congress