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（由申请人提供）：肾脏捐赠是挽救生命的终末期肾病，提供了一个相对健康和富有成效的生活的可能性。不幸的是，相对于需要的患者数量，供体肾脏的数量严重不足。针对这种情况的一种新方法是创建由非定向（利他）供体触发的移植链。当一个非定向（利他）捐赠者将肾脏捐赠给一个有意愿但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，他或她最初的意愿不相容的捐赠者-被称为桥梁捐赠者-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，他们最初的不相容捐赠者同样会将慷慨传递给第三个接受者。此过程可以重复多次迭代， 移植链。作为连锁反应的一部分接受移植的病人被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他们的位置。这种方法有可能减少对已故捐赠器官的竞争，缓解等待名单上的压力。然而，很少有人知道非定向（利他）捐赠者和桥梁捐赠者如何决定捐赠肾脏，也不知道实际捐赠的潜在捐赠者与那些没有完成捐赠过程的捐赠者的特征。从我们的试点研究中出现的主题表明，需要进一步调查捐赠者的情感旅程，特别是移植后。捐助者的人口统计学，强大的健康和生活质量的结果，以及具体的信念之间的惊人模式是显而易见的。因此，本研究采用定性主导的混合方法的方法来发展一个解释框架的非直接捐助者和桥梁捐助者的决策过程。那些考虑成为非定向（利他）捐赠者或桥梁捐赠者，但最终决定不捐赠的人以及实际的非定向（利他）捐赠者和桥梁捐赠者将被招募。参与者将完成一个深入的采访，以及健康相关的生活质量，焦虑和抑郁的定量措施。访谈指南的制定和量化指标的选择将由肾移植界的利益相关者咨询委员会提供信息，包括肾脏捐献者和接受者、肾脏捐献者接受者的家属、肾脏捐献倡导者和移植登记处的代表。为了最终扩大捐献者的范围，这项研究的结果将首次提供对潜在和实际的利他肾脏捐献者的深入描述，这将为为考虑肾脏捐献的个人开发教育材料提供基础，创建和测试工具以识别那些最有可能成为成功的利他肾脏捐献者，并发展概念和假设，以进一步探索这一新的和创新的现象。