Hall Marc, Afzal Arfan, Fox Danielle E, Thibodeau Carrie, Lauder Lydia, Coldwell Kristi, Davidson Sandra J, Dewell Sarah L
Faculty of Nursing, The University of Calgary, Calgary, Alberta, Canada.
Department of Community Health Sciences, The University of Calgary, Calgary, Alberta, Canada.
J Patient Exp. 2025 Aug 29;12:23743735251371781. doi: 10.1177/23743735251371781. eCollection 2025.
Those on transplant journeys must try to understand and navigate a complex healthcare system. Little is known about whether the challenges they face differ based on their individual characteristics. This study was done to understand the experiences of those on transplant journeys in Canada. Using an online 57-question cross-sectional survey developed in collaboration with a patient-advisory committee, data was captured on transplant patients, caregivers, and living donors (n = 935). Descriptive statistics and logistic regression analyses are reported. This article includes analyses not previously reported from this larger mixed-methods project. Most participants were female (70.1%), English speaking (92.6%), and white (87.8%). The top 3 concerns identified by participants included financial (42.6%), coordination of care (37.7%), and mental health (37.2%), which affected journey types, organ types, and sociodemographic groups differently. Understanding the perspectives of those going through transplant journeys is critical to inform system change. Further, identifying how individual characteristics influence transplant journeys is essential to person-centered care that creates a lasting impact on the organ donation and transplant system and health outcomes.
那些处于移植过程中的人必须努力去理解并应对一个复杂的医疗保健系统。对于他们所面临的挑战是否因个人特征而异,人们知之甚少。开展这项研究是为了了解加拿大处于移植过程中的人们的经历。通过与一个患者咨询委员会合作开发的一项包含57个问题的在线横断面调查,收集了移植患者、护理人员和活体捐赠者的数据(n = 935)。报告了描述性统计和逻辑回归分析结果。本文包含了此前未在这个更大的混合方法项目中报告过的分析。大多数参与者为女性(70.1%)、讲英语(92.6%)且为白人(87.8%)。参与者确定的前三大担忧包括财务问题(42.6%)、护理协调(37.7%)和心理健康(37.2%),这些担忧对不同的旅程类型、器官类型和社会人口群体产生了不同影响。了解处于移植过程中的人们的观点对于推动系统变革至关重要。此外,确定个人特征如何影响移植过程对于以患者为中心的护理至关重要,这种护理会对器官捐赠和移植系统以及健康结果产生持久影响。