Experiences of Unanticipated Outcomes Among Ethnically Diverse Living Kidney Donors: A Qualitative Pilot Study

IF 1.9 4区医学 Q2 SURGERY Clinical Transplantation Pub Date : 2024-10-18 DOI:10.1111/ctr.15476

Miriam Vélez-Bermúdez, Heidi Rishel Brakey, Larissa Myaskovsky, Mark Unruh, Pooja P. Singh, Nancy Pandhi

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引用次数: 0

Abstract

Introduction

Although living kidney donation is generally considered a safe procedure, it is ethically critical that prospective donors are fully informed before consent. However, prospective donors lack a deep understanding of the donation experience, making the postdonation aftermath feel unanticipated. We sought to gain in-depth qualitative descriptions of the short- and long-term risks and benefits associated with kidney donation among an ethnically diverse group of donors to offer a balanced view of the positive and negative experiences that may occur postdonation.

Methods

We conducted individual narrative in-depth interviews (September 2020–March 2021) using the DIPEx (database of individual patient experiences) method with former living kidney donors primarily via Zoom.

Results

Fourteen donors (10 women; 8 White, 5 Hispanic, and 1 Native American) completed interviews. Interactions with healthcare providers leading up to donation were largely positive; however, lack of clarity regarding postdonation laboratory values among primary care providers led three participants to be erroneously told they developed kidney disease. Most experienced unanticipated outcomes, including postsurgical complications (e.g., hernia), long-term fatigue (i.e., ≥12 weeks), emotional distress (e.g., depression), hypertension, and gout. Difficulty obtaining life insurance following donation was an unexpected challenge. Despite these issues, participants were unanimously enthusiastic about living kidney donation and reported no regrets.

Conclusions

Enthusiasm for living kidney donation remained high among all participants despite most experiencing negative outcomes. These findings suggest that greater transparency regarding postdonation experiences may not preclude the decision to move forward with living kidney donation. These narratives will be utilized for an online module of lived experiences of donation.

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不同种族的活体肾脏捐献者对意外结果的体验：定性试点研究

导言尽管活体肾脏捐献被普遍认为是一种安全的程序，但从伦理角度讲，潜在捐献者在同意捐献前充分了解相关信息至关重要。然而，潜在捐献者缺乏对捐献经历的深刻理解，因此捐献后的后遗症让人感觉始料未及。我们试图对不同种族的捐献者群体进行深入的定性描述，以了解与肾脏捐献相关的短期和长期风险和益处，从而对捐献后可能出现的积极和消极经历提供一个平衡的视角。方法我们使用 DIPEx（患者个人经历数据库）方法，主要通过 Zoom 对前活体肾脏捐献者进行了个人叙述式深度访谈（2020 年 9 月至 2021 年 3 月）。结果 14 名捐献者（10 名女性；8 名白人、5 名西班牙裔和 1 名美国原住民）完成了访谈。捐献前与医疗服务提供者的互动基本上是积极的；但是，由于初级医疗服务提供者对捐献后的实验室值不清楚，导致三名参与者被错误地告知他们患上了肾病。大多数人经历了意想不到的结果，包括手术后并发症（如疝气）、长期疲劳（即≥12 周）、情绪困扰（如抑郁）、高血压和痛风。捐献后难以获得人寿保险是一个意想不到的挑战。尽管存在这些问题，参与者一致热衷于活体肾脏捐献，并表示不后悔。结论尽管大多数人都经历了负面结果，但所有参与者对活体肾脏捐献的热情仍然很高。这些研究结果表明，提高捐肾后经历的透明度可能不会妨碍活体捐肾的决定。这些叙述将用于捐赠生活经历的在线模块。

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来源期刊

Clinical Transplantation 医学-外科

CiteScore

3.70

自引率

4.80%

发文量

286

审稿时长

2 months

期刊介绍： Clinical Transplantation: The Journal of Clinical and Translational Research aims to serve as a channel of rapid communication for all those involved in the care of patients who require, or have had, organ or tissue transplants, including: kidney, intestine, liver, pancreas, islets, heart, heart valves, lung, bone marrow, cornea, skin, bone, and cartilage, viable or stored. Published monthly, Clinical Transplantation’s scope is focused on the complete spectrum of present transplant therapies, as well as also those that are experimental or may become possible in future. Topics include: Immunology and immunosuppression; Patient preparation; Social, ethical, and psychological issues; Complications, short- and long-term results; Artificial organs; Donation and preservation of organ and tissue; Translational studies; Advances in tissue typing; Updates on transplant pathology;. Clinical and translational studies are particularly welcome, as well as focused reviews. Full-length papers and short communications are invited. Clinical reviews are encouraged, as well as seminal papers in basic science which might lead to immediate clinical application. Prominence is regularly given to the results of cooperative surveys conducted by the organ and tissue transplant registries. Clinical Transplantation: The Journal of Clinical and Translational Research is essential reading for clinicians and researchers in the diverse field of transplantation: surgeons; clinical immunologists; cryobiologists; hematologists; gastroenterologists; hepatologists; pulmonologists; nephrologists; cardiologists; and endocrinologists. It will also be of interest to sociologists, psychologists, research workers, and to all health professionals whose combined efforts will improve the prognosis of transplant recipients.