中晚期慢性肾脏病患者亲友的经历:来自CKD-REIN队列研究的见解。

IF 3.5 2区 心理学 Q1 PSYCHOLOGY, CLINICAL
Lucile Montalescot, Géraldine Dorard, Elodie Speyer, Karine Legrand, Carole Ayav, Christian Combe, Bénédicte Stengel, Aurélie Untas
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引用次数: 0

摘要

目的:从慢性肾脏疾病(CKD)到需要肾脏替代治疗(KRT;即透析或移植)来维持生命的肾衰竭的转变对患者来说是一个压力事件。家庭在患者的治疗决策中发挥着作用,但人们对他们是如何参与的知之甚少。本研究旨在探讨CKD在亲友中的经历、他们的观点以及对KRT选择的参与。设计/方法:我们对参与CKD-REIN队列研究的56名中晚期CKD患者的亲属或朋友进行了一项定性研究。一位心理学家对他们的CKD经历、治疗决策以及他们在这一过程中的作用进行了半结构化访谈。使用统计文本分析对数据进行分析。结果:参与者的平均年龄为56.4岁 ± 14 年;75%是女性,61%是患者的伴侣,48%有G4期CKD的亲戚或朋友。该分析产生了四个词汇类别:有意见的听众、日常应对CKD、讲述患者的肾脏病监测和事实背后的情绪。与会者报告了在决策期间的倾听作用和信息需求。一些人报告说,CKD对他们自己的日常生活没有影响,但另一些人谈到了它对他们、患者及其关系的当前和未来的身体、心理和社会后果。结论:大多数亲属/朋友表示对KRT决策影响不大,但对这些治疗方法表达了意见。让亲属/朋友参与KRT的教育,并为他们提供决策辅助工具,尤其是在家人支持的情况下,可能会做出更合适的决定。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The experience of relatives and friends of patients with moderate to advanced chronic kidney disease: Insights from the CKD-REIN cohort study

Objectives

The transition from chronic kidney disease (CKD) to kidney failure requiring kidney replacement therapy (KRT; i.e., dialysis or transplantation) to sustain life is a stressful event for patients. Families play a role in patients' treatment decision-making, but little is known about how they are involved. This study aimed to explore the experience of CKD among relatives and friends, their views and involvement in KRT choice.

Design/Methods

We conducted a qualitative study among 56 relatives or friends of patients with moderate to advanced CKD who were enrolled in the CKD-REIN cohort study. A psychologist conducted semi-structured interviews about their experience with CKD, treatment decision-making and their role in this process. Data were analysed using statistical text analysis.

Results

The mean age of participants was 56.4 ± 14 years; 75% were women, 61% were patients' partners and 48% had a relative or friend with stage G4 CKD. The analysis yielded four lexical classes: listeners with an opinion, coping with CKD on a daily basis, narrating patients' nephrological monitoring and emotions behind facts. Participants reported a listening role in the decision-making period and information needs. Some reported that CKD had no impact on their own daily lives, but others talked about its current and future physical, psychological and social consequences on them, the patients and their relationships.

Conclusions

Most relatives/friends reported having little influence on KRT decision-making but expressed opinions on these treatments. Including relatives/friends in education on KRT and providing them with decision aids, especially when family members are supportive, may allow for more suitable decisions.

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来源期刊
British Journal of Health Psychology
British Journal of Health Psychology PSYCHOLOGY, CLINICAL-
CiteScore
14.10
自引率
1.30%
发文量
58
期刊介绍: The focus of the British Journal of Health Psychology is to publish original research on various aspects of psychology that are related to health, health-related behavior, and illness throughout a person's life. The journal specifically seeks articles that are based on health psychology theory or discuss theoretical matters within the field.
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