Pines Rachyl, Iraheta Yaquelin Arevalo, Dahmani Katia A, Cooper Matthew, Waterman Amy D
Cottage Health Research Institute, 22854Santa Barbara Cottage Hospital, Santa Barbara, CA, USA.
Division of Nephrology, David Geffen School of Medicine, University of California, Los Angeles, CA, USA.
Prog Transplant. 2022 Mar;32(1):19-26. doi: 10.1177/15269248211064878. Epub 2021 Dec 13.
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.
We conducted a mixed methods study, including semistructured interviews and quantitative surveys, with 43 participants (25 living donors; 18 kidney recipients).
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.
Standardized, health literate educational content addressing the gaps and variability in education received may help increase paired donation informed decision-making.
让潜在的肾脏患者和活体供体了解肾脏配对捐赠的风险和益处,以确保他们做出明智的决定,这一过程很复杂。本研究旨在增进对患者和供体捐赠决策、他们所接受的教育内容以及他们对教育改进建议的理解。
我们开展了一项混合方法研究,包括对43名参与者(25名活体供体;18名肾脏接受者)进行半结构化访谈和定量调查。
参与者表示,配对捐赠的益处促使他们参与其中(即帮助更多人、更快接受移植、捐赠时间灵活)。尽管对一些人来说,决定参与配对捐赠是一个系统、合乎逻辑且经过深思熟虑的过程。但对大多数人来说,这是一个迅速做出的、通常基于情感的决定。不同主题的配对捐赠教育内容各不相同,接受者报告称,他们在捐赠者保护以及改善所面临挑战(如交换和链条中断、匹配延迟)的流程方面获得的信息比捐赠者少。那些面临挑战的人要求在配对捐赠期间及之后获得更多关于捐赠者保护和支持的信息。尽管许多人认可他们的移植协调员很有帮助,但参与者也建议在了解肾脏配对捐赠方面更加积极主动,并事先与前捐赠者和接受者交流。
针对所接受教育中的差距和差异,制定具有健康素养的标准化教育内容,可能有助于提高配对捐赠的知情决策水平。