Division of Nephrology, David Geffen School of Medicine, University of California Los Angeles, CA, USA.
Terasaki Research Institute, Los Angeles, CA, USA.
Prog Transplant. 2020 Jun;30(2):76-87. doi: 10.1177/1526924820913520. Epub 2020 Apr 2.
Early tailored transplant education could help patients make informed transplant choices.
We interviewed 40 patients with chronic kidney disease (CKD) stages 3 to 5, 13 support persons, and 10 providers at Kaiser Permanente Southern California to understand: (1) barriers to transplant education and (2) transplant educational preferences and recommendations based on CKD stage and primary language spoken.
A grounded theory analysis identified central themes related to transplant education barriers, preferences, and recommendations.
Barriers included confusion about diagnosis and when transplant may be necessary, concerns about transplant risks, families' lack of transplant knowledge, financial burdens, transportation and scheduling, and the emotional overload of chronic illness. Hispanic and Spanish-speaking participants reported difficulty in understanding transplant education and medical mistrust. Recommendations included providing general education, earlier introduction to transplant, wait-listing information, transplant education for support persons, living donation education for patients and potential donors, opportunities to meet living donors and kidney recipients, information on the benefits of transplant, recovery, and available financial resources, flexible class scheduling, online and print resources, and more provider follow-up. Spanish-speaking and Hispanic participants recommended using bilingual educators, print, video, and online resources in Spanish, and culturally responsive education. Patients with CKD stages 3 to 4 wanted information on slowing disease progression and avoiding transplant.
Increasing access to culturally responsive transplant education in multiple languages, pairing appropriate content to the disease stage, and increasing system-wide follow-up as the disease progresses might help patients make more informed choices about transplant.
早期定制的移植教育可以帮助患者做出明智的移植选择。
我们采访了加利福尼亚州南部 Kaiser Permanente 的 40 名慢性肾脏病 (CKD) 3 至 5 期患者、13 名支持人员和 10 名提供者，以了解：(1) 移植教育的障碍，(2) 根据 CKD 分期和主要语言，了解移植教育的偏好和建议。
扎根理论分析确定了与移植教育障碍、偏好和建议相关的核心主题。
障碍包括对诊断和何时可能需要移植的困惑、对移植风险的担忧、家属缺乏移植知识、经济负担、交通和日程安排，以及慢性疾病的情绪负担过重。西班牙裔和西班牙语患者报告说，他们难以理解移植教育和对医疗的不信任。建议包括提供一般教育、更早地介绍移植、等待名单信息、为支持人员提供移植教育、为患者和潜在供体提供活体捐赠教育、有机会与活体供体和肾受体会面、了解移植的好处、康复和可用的经济资源、灵活的课程安排、在线和印刷资源，以及更多的提供者随访。西班牙语和西班牙语患者建议使用双语教育者、西班牙语的印刷、视频和在线资源以及文化响应教育。CKD 3 至 4 期的患者希望获得关于减缓疾病进展和避免移植的信息。
增加多种语言的文化响应移植教育的可及性，将适当的内容与疾病分期配对，并在疾病进展时增加系统范围的随访，可能有助于患者更明智地选择移植。
