1 Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia. 2 Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. 3 Centre for Transplant and Renal Research, Westmead Hospital, Westmead, NSW, Australia. 4 Department of Nephrology, Monash Medical Centre, Clayton, VIC, Australia. 5 Department of Medicine, Monash University, Clayton, VIC, Australia. 6 Division of Nephrology, University of British Columbia, Vancouver, BC, Canada. 7 Kidney Node, Charles Perkins Centre, The University of Sydney, Camperdown, NSW, Australia. 8 Renal Medicine, Royal Prince Alfred Hospital, Camperdown, NSW, Australia.
Transplantation. 2017 Oct;101(10):2627-2635. doi: 10.1097/TP.0000000000001771.
Ensuring donor wellbeing warrants ongoing monitoring after living kidney donation. However, there is considerable variability in donor follow-up processes, including information provided to donors regarding self-care. Loss to follow-up is common, suggesting that the aims and benefits of monitoring and follow-up may not be apparent. We aimed to describe the experiences and expectations of living kidney donors regarding follow-up and self-care after donation.
Participants from 3 transplant centers in Australia and Canada participated in 14 focus groups (n = 123). Transcripts were analyzed thematically.
We identified 4 themes: lacking identification as a patient (invincibility and confidence in health, immediate return to normality, avoid burdening specialty services, redundancy of specialist attention, unnecessary travel), empowerment for health (self-preservation for devastating consequences, self-advocacy and education, needing lifestyle advice, tracking own results), safety net and reassurance (availability of psychosocial support, confidence in kidney-focused care, continuity and rapport, and access to waitlist priority), and neglect and inattention (unrecognized ongoing debilitations, primary focus on recipient, hospital abandonment, overlooking individual priorities, disconnected from system, coping with dual roles, and lacking support for financial consequences).
Living kidney donors who felt well and confident about their health regarded specialist follow-up as largely unnecessary. However, some felt they did not receive adequate medical attention, were prematurely detached from the health system, or held unresolved anxieties about the consequences of their decision to donate. Ongoing access to healthcare, psychosocial support, and education may reassure donors that any risks to their health are minimized.
活体肾脏捐献后，确保供体的健康需要持续监测。然而，供体的随访过程存在很大的差异，包括向供体提供有关自我护理的信息。失访很常见，这表明监测和随访的目的和益处可能不明显。我们旨在描述活体肾脏捐献者对捐赠后随访和自我护理的经验和期望。
来自澳大利亚和加拿大的 3 个移植中心的参与者参加了 14 个焦点小组（n=123）。对转录本进行了主题分析。
我们确定了 4 个主题：缺乏患者身份认同（对健康的不可战胜和信心、立即恢复正常、避免给专科服务带来负担、专科关注的冗余、不必要的旅行）、赋予健康权力（为灾难性后果进行自我保护、自我倡导和教育、需要生活方式建议、跟踪自己的结果）、安全网和保证（心理社会支持的可用性、对肾脏为中心的护理的信心、连续性和融洽关系，以及获得候补名单优先权）以及忽视和不关注（未被认识到的持续衰弱、对受赠者的主要关注、医院放弃、忽视个人优先事项、与系统脱节、应对双重角色以及缺乏对经济后果的支持）。
感觉良好且对自己健康充满信心的活体肾脏捐献者认为专科随访在很大程度上是不必要的。然而，一些人认为他们没有得到足够的医疗关注，过早地脱离了医疗系统，或者对他们决定捐献的后果仍存在未解决的焦虑。持续获得医疗保健、心理社会支持和教育可能会让供体放心，他们的健康风险最小化。
