A Mixed Methods Approach to Understand Donor Choice

了解捐助者选择的混合方法

• 批准号: 8702950
• 负责人: SALLY L Maliski
• 金额: $ 23.1万
• 依托单位: UNIVERSITY OF CALIFORNIA LOS ANGELES
• 依托单位国家: 美国
• 财政年份: 2014
• 资助国家: 美国
• 起止时间: 2014-05-01 至 2016-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8702950
• 关键词: Acculturation; Address; Advocate; Anxiety; Belief; Blood typing procedure; California; Characteristics; Communities; Comorbidity; Decision Making; Demographic Aging; Development; Dialysis procedure; Education; Educational Materials; Emotional; Employee Strikes; End stage renal failure; Ethnic Origin; Family; Family member; Foundations; Friends; Gender; Health; Individual; Insurance Coverage; Interview; Kidney; Kidney Transplantation; Life; Living Donors; Measures; Mental Depression; Mental Health; Methods; Occupations; Organ; Organ Donor; Outcome; Participant; Patients; Pattern; Pilot Projects; Positioning Attribute; Process; Quality of life; Recruitment Activity; Registries; Relative (related person); Religion; Rights; Solutions; Spottings; Survival Rate; Testing; Transplantation; United States; Waiting Lists; Work; demographics; experience; health related quality of life; income insurance; innovation; insight; interest; meetings; novel; novel strategies; operation; public health relevance; screening; tool; transplant registry

DESCRIPTION (provided by applicant): Kidney donation is life-saving for those with end-stage renal disease, providing the possibility of a relatively healthy and productive life. Unfortunately, there is a severe deficit in the number of donor kidneys relative to the number of patients in need. A novel approach to this situation has been the creation of transplantation chains triggered by non-directed (altruistic) donors. Transplantation chains are initiated when a non-directed (altruistic) donor donates a kidney to a patient who has a willing but incompatible donor. Once this recipient is transplanted, his or her original willing-incompatible donor - known as a bridge donor - then passes on the generosity to another recipient. Once the second recipient receives a transplant, their original incompatible donor likewise passes on the generosity to a third recipient. This process can be repeated for multiple iterations creating long chains of transplantations. The patients who receive transplants as part of chains are removed from the deceased donor waiting list, enabling other candidates to move up the waiting list and take their spots. This approach has potential to decrease the competition for deceased donor organs, easing the strain on the waiting list. Yet, very little is known about how non-directed (altruistic) donors and bridge donors make decisions about donating a kidney, nor about characteristics of potential donors who actually donate versus those who do not complete the donation process. Emerging themes from our pilot study suggest a need to further investigate the emotional journey of donors, especially post transplant. Striking patterns between donor demographics, strong health and quality of life outcomes, and specific beliefs are apparent. Therefore, this study utilizes a qualitative-dominant mixed methods approach to develop an explanatory framework for the decisional processes of non-directed donors and bridge donors. People who considered becoming non-directed (altruistic) donors or bridge donors but eventually decided against donating as well as actual non-directed (altruistic) donors and bridge donors will be recruited. Participants will complete an in-depth interview as well as quantitative measures of health related quality of life, anxiety, and depression. The development of the interview guide and selection of the quantitative measures will be informed by an advisory board of stakeholders in the kidney transplant community, including kidney donors and recipients, family members of kidney donor recipients, kidney donation advocates, and representatives from transplant registries. In an effort to ultimately expand the donor pool, results from this stuy will be the first to provide an in-depth description of potential and actual altruistic kidney donos that will provide the foundation upon which to develop educational materials for individuals contemplating kidney donation, create and test tools to identify those most likely to be successful altruistic donors, and to develop concepts and hypotheses to further explore this new and innovative phenomena.

描述(申请人提供)：肾脏捐赠是终末期肾病患者的救命之道，为他们提供了相对健康和富有成效的生活的可能性。不幸的是，与有需要的患者数量相比，捐献肾脏的数量严重不足。解决这种情况的一种新方法是创建由非定向(利他)捐赠者触发的移植链。当非定向(利他)捐赠者将肾脏捐赠给有自愿但配型不相容的捐赠者的患者时，移植链就开始了。一旦这个接受者被移植，他或她最初的自愿血型不合的捐赠者--也就是所谓的过渡性捐赠者--然后将慷慨传递给另一个接受者。一旦第二个接受者接受了移植，他们最初的血型不合的捐赠者也会将慷慨传递给第三个接受者。此过程可针对创建长时间的多次迭代重复 一连串的移植。作为链条的一部分接受移植的患者将从已故捐赠者等待名单中删除，使其他候选人能够在等待名单上移动并占据自己的位置。这种方法有可能减少对已故捐赠者器官的竞争，缓解等待名单上的压力。然而，对于非定向(利他)捐赠者和过渡性捐赠者如何做出捐赠肾脏的决定，以及真正捐献的潜在捐赠者与未完成捐赠过程的潜在捐赠者的特征，我们知之甚少。从我们的初步研究中出现的主题表明，有必要进一步研究捐赠者的情感之旅，特别是移植后的情感之旅。捐赠者的人口结构、强大的健康和生活质量结果以及特定的信仰之间的显著模式是显而易见的。因此，本研究采用定性-显性混合方法，构建了非定向捐赠者和过渡性捐赠者决策过程的解释框架。那些考虑成为非定向(利他)捐赠者或过渡性捐赠者，但最终决定不捐赠的人，以及实际的非定向(利他)捐赠者和过渡性捐赠者将被招募。参与者将完成深度访谈以及与健康相关的生活质量、焦虑和抑郁的量化测量。一个由肾移植界利益相关者组成的咨询委员会将为访谈指南的制定和量化措施的选择提供信息，这些利益相关者包括肾脏捐赠者和接受者、肾脏捐赠者的家属、肾脏捐赠倡导者和移植登记处的代表。为了最终扩大捐赠者群体，这项研究的结果将首次对潜在的和实际的利他肾捐赠提供深入的描述，这将为考虑肾捐赠的个人开发教育材料提供基础，创建和测试工具来识别那些最有可能成功的利他捐赠者，并开发概念和假设来进一步探索这一新的创新现象。