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

Rationale & Objective: Despite the development of numerous educational interventions, there has been limited change in actual living donor kidney transplant (LDKT) rates over time. New strategies, such as the inclusion of patient stories in patient education, show promise to inspire more people to donate kidneys. This study identified the challenges faced, coping strategies used, and advice shared by transplant donors and recipients. Study Design: Qualitative thematic analysis. Setting & Participants: One hundred eighteen storytellers across the United States and Canada, including 82 living donors and 36 kidney recipients of living donor transplants who shared their stories on the Living Donation Storytelling Project (explorelivingdonation.org), an online digital storytelling platform and library. Analytical Approach: A poststorytelling survey assessed participant demographics. Two coders conducted tool-assisted (Dedoose v.8.3.35) thematic analysis on narrative storytelling videos and transcripts. Results: Storytellers were predominantly White (79/118, 66.95%), female (76/118, 64.41%), and non-Hispanic (109/118, 92.37%) with college/vocational education (50/118, 42.37%). Common themes were found related to living donation challenges for donors and recipients (eg, the fear of not being able to complete the LDKT process, of unsupportive family or rejected donation requests, and of unknown or adverse surgical outcomes and graft rejection) and recommended coping strategies (eg, seeking LDKT information, using prayer, and relying on a support network). Recipients provided advice that included being proactive and staying hopeful, whereas donors recommended seeking support, researching LDKT to comprehensively learn, and building a community of support. Limitations: Limited representation of diverse demographics. Conclusions: Although supplementary to traditional education about LDKT, digital storytelling provides a source of peer support that can enhance the experience of donors and recipients and encourage autonomy and self-management after transplant.

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

INTRODUCTION: Educating potential kidney patients and living donors about the risks and benefits of kidney paired donation to ensure they make informed decisions is complex. This study aimed to increase understanding of patients' and donors' decision-making about donation, the educational content they received, and their recommendations for educational improvements. METHOD: We conducted a mixed methods study, including semistructured interviews and quantitative surveys, with 43 participants (25 living donors; 18 kidney recipients). FINDINGS: Participants reported that the benefits of paired donation motivated them to participate (ie, helping multiple people, receiving a transplant sooner, flexible timing of donation). Although deciding to participate in paired donation was a systematic, logical, and carefully considered process for some. For most, it was a quickly made, often emotion-based decision. Paired donation educational content on different topics varied, with recipients reporting receiving less information than donors about donor protections and processes to ameliorate the challenges faced, such as broken swaps and chains, and delays in matching. Those who faced challenges requested more information about donor protections and support during and after paired donation. Although many acknowledged their transplant coordinators' helpfulness, participants also recommended being more proactive in learning about kidney paired donation and speaking to former donors and recipients beforehand. DISCUSSION: Standardized, health literate educational content addressing the gaps and variability in education received may help increase paired donation informed decision-making.

Findings of living donation experiences shared on a digital storytelling platform: A thematic analysis.

Objectives: To identify common experiences and emotional changes shared by living donors and kidney recipients about their living donation experiences on a digital storytelling platform. Methods: 82 donors and 36 recipients submitted prompt-guided videos to the platform. Two coders analyzed transcripts for motivations, common themes, and emotions expressed. Results: Storytellers shared their stories to advocate for living donation and contribute to others facing similar challenges. Pre-surgery, recipients recalled their dialysis experiences and how they sought living donors while donors discussed their motivations and common fears. Post-surgery, recipients discussed changes in their relationship with the donor and quality life, while donors described how they benefited. Learning they needed a transplant, recipients reported feeling fear (33.3%) while donors felt sadness (48.8%). Post-transplant, recipients and donors reported feeling happiness (85.4%, 38.9%) and relief (29.3%, 22.2%). Conclusion: Online digital storytelling libraries increase access to real-life living donation experiences. Since stories are highly personal, additional living donor kidney transplant risk-benefit education is needed. Innovation: Stories can supplement traditional education and be incorporated into advocacy efforts; campaigns could capitalize upon the personal aspect of stories to gently introduce and encourage living kidney donation among the general public.