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青年肾衰竭患者的肾脏替代治疗决策体验。

Young adults with kidney failure lived experiences of kidney replacement therapy decision-making.

机构信息

Institute of Health and Social Care, London South Bank University, London, UK.

出版信息

J Ren Care. 2024 Dec;50(4):454-467. doi: 10.1111/jorc.12508. Epub 2024 Aug 6.

Abstract

BACKGROUND

Young adults living with kidney failure make decisions to select a kidney replacement therapy choice in partnership with healthcare professionals. However, little is known about how they experience kidney replacement therapy treatment decision-making and the impact this has on their well-being.

OBJECTIVES

To explore young adults living with kidney failure experiences of treatment decision-making. The treatment decision-making investigated is about the choice of dialysis and/or kidney transplant options.

DESIGN

A qualitative interpretive hermeneutic phenomenology study.

PARTICIPANTS

Purposeful sampling was used to recruit young adults with kidney failure from social media, electronic media such as local kidney group websites and word of mouth. Semistructured interviews were conducted with (n = 18) participants aged 18-30 years.

APPROACH

Inductive analysis of the data were performed using Braun and Clarke's thematic analysis framework.

FINDINGS

The five themes generated were (1) awareness and anticipation of future kidney replacement therapy decision; (2) health information and education; (3) engaging in decision-making, support and choices; (4) implementation of kidney replacement therapy and transitioning into the new normal life and (5) the impact of decision-making and choice on well-being.

CONCLUSIONS

Decision-making significantly affected young adults' psychosocial and mental well-being. Young adults had unmet informational and decisional needs and struggled to cope due to lack of support. A four-talk model, with an implement talk phase added to the existing three-talk (team talk, option talk, decision talk) shared decision-making model, would promote a focus on the implementation of choice and support the transitioning from previous life to long-term dependence on treatment.

摘要

背景

年轻的肾衰竭患者与医疗保健专业人员合作做出选择肾脏替代治疗方案的决定。然而,对于他们在肾脏替代治疗决策中的体验以及这对他们的幸福感有何影响,人们知之甚少。

目的

探讨年轻的肾衰竭患者在治疗决策方面的体验。研究中调查的治疗决策是关于透析和/或肾移植选择的决策。

设计

定性解释性诠释现象学研究。

参与者

采用目的性抽样,从社交媒体、当地肾脏团体网站等电子媒体以及口碑中招募年龄在 18-30 岁之间的肾衰竭年轻患者。对 18 名参与者进行了半结构化访谈。

方法

使用 Braun 和 Clarke 的主题分析框架对数据进行归纳分析。

结果

生成了五个主题:(1)对未来肾脏替代治疗决策的意识和预期;(2)健康信息和教育;(3)参与决策、支持和选择;(4)肾脏替代治疗的实施以及向新生活的过渡;(5)决策和选择对幸福感的影响。

结论

决策对年轻患者的心理社会和心理健康有重大影响。年轻患者存在信息和决策需求未得到满足的问题,由于缺乏支持,他们难以应对。在现有的三谈(团队谈、选项谈、决策谈)分享决策模型中增加实施谈阶段,将促进对选择的实施的关注,并支持从以前的生活向长期依赖治疗的过渡。

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