Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada; Division of Experimental Medicine, Department of Medicine, McGill University Health Centre, Montreal, Quebec, Canada.
Research Institute of the McGill University Health Centre, Montreal, Quebec, Canada.
Transplant Rev (Orlando). 2024 Jul;38(3):100855. doi: 10.1016/j.trre.2024.100855. Epub 2024 Apr 10.
Despite the lauded benefits of living kidney donation, there is growing evidence of the challenges that living kidney donors (LKD) encounter in their donation trajectory and gaps in healthcare service provision. However, most of the evidence is derived from research conducted by clinicians or academic investigators. Significantly less attention has been devoted to analyzing unsolicited accounts of LKDs' experiences.
We conducted a review and synthesis of published unsolicited first-person narratives of LKDs and aimed to synthesize their experiences and identify care needs. Four electronic databases were searched and 27 LKD narratives were included in our final analysis. Thematic synthesis was used to generate themes inductively.
Although the majority of LKDs reported the act of donation to be a fulfilling experience, almost 48% reported encountering challenges in the care that they received. Also, 29% of LKDs reported experiencing an adverse clinical event. Five distinct themes emerged surrounding the donation experience and healthcare needs: 1) Educational needs due to perceived lack of transparency and compensating for knowledge gaps; 2) Respect for donor autonomy due to coercive influences from family or healthcare providers, lack of respect for donor preferences and loopholes in the consent process; 3) Unmet care needs related to poor communication with healthcare providers, coordination issues and inconsistent and inadequate long-term care; 4) Unanticipated outcomes due to economic costs and the emotional burden of donation; and 5) Contributing beyond the donation event by advocating for a balanced view of donation and generating support mechanisms.
In this synthesis of LKDs narratives, important care gaps and the need to advocate for a balanced perspective on living kidney donation were highlighted. Our review underscores the value of patients' own stories as critical evidence that can inform improvement in healthcare service delivery.
尽管活体肾捐赠带来了诸多益处，但越来越多的证据表明，活体肾供者（LKD）在捐赠过程中面临挑战，并且医疗保健服务提供方面存在差距。然而，大多数证据来自临床医生或学术研究人员的研究。很少有人关注分析 LKD 经历的未征求意见的描述。
我们对已发表的 LKD 未征求意见的第一人称叙述进行了回顾和综合分析，旨在综合他们的经验并确定护理需求。我们搜索了四个电子数据库，最终分析中纳入了 27 份 LKD 叙述。使用主题综合方法进行归纳式主题生成。
尽管大多数 LKD 报告捐赠行为是一种充实的体验，但近 48%的人报告在他们所接受的护理中遇到了挑战。此外，29%的 LKD 报告经历了不良的临床事件。围绕捐赠体验和医疗保健需求出现了五个不同的主题：1）由于缺乏透明度和弥补知识差距而产生的教育需求；2）由于来自家庭或医疗保健提供者的强制影响、对供者偏好的不尊重以及同意过程中的漏洞而导致的尊重供者自主权；3）由于与医疗保健提供者沟通不畅、协调问题以及长期护理不一致和不足而导致的未满足的护理需求；4）由于经济成本和捐赠的情感负担而导致的意外结果；5）通过倡导对捐赠的平衡观点和生成支持机制来超越捐赠事件做出贡献。
在对 LKD 叙述的综合分析中，突出了重要的护理差距和倡导对活体肾捐赠的平衡观点的必要性。我们的综述强调了患者自己的故事作为关键证据的价值，这些证据可以为改善医疗保健服务提供提供信息。
