Exploring the health-related decision-making experiences of people with chronic kidney disease and their caregivers: A qualitative study.
Exploring the health-related decision-making experiences of people with chronic kidney disease and their caregivers: A qualitative study.
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DOI：
10.1111/hex.13907
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发表时间：
2024-02
影响因子：
3.2
通讯作者：
Odom, James N.
中科院分区：
文献类型：
--
作者：
Gazaway, Shena;Gutierrez, Orlando;Wells, Rachel;Nix-Parker, Tamara;Lyas, Claretha;Daniel, Shawona;Lang-Lindsey, Katina;Bryant, Tara;Knight, Richard;Odom, James N.
本研究旨在探讨慢性肾脏疾病（CKD）患者及其护理人员的决策经验。这是一项对3 -末期CKD患者及其家庭护理人员决策经验的定性描述性研究。一对一的半结构化访谈采用由社区咨询小组制定并批准的指南进行。数据采用专题分析进行分析。确定了三个主题：(1)健康状况下降和范围广泛引发的决策；(2)决策面临的挑战；(3)影响决策的因素。参与者的健康相关决策经验表明，决策是在健康状况下降时触发的。然而，影响疾病进展的决定是在第三阶段做出的。由于缺乏信息、复杂的合并症和较差的资源利用，使得决策变得困难。然而，医疗预约的结构和性质、支持性护理人员和资源有助于消除挑战。决策支持干预措施必须培训患者和护理人员，使其成为晚期疾病上游寻求答案行为的授权参与者。这项工作是在由CKD患者、护理人员和临床医生组成的社区咨询委员会的全面合作下进行的。这些成员在致谢部分被注明，那些与团队一起制定访谈指南、研究方案和手稿准备的人被列为作者。作为其职责的一部分，顾问成员每月举行一次会议，就招聘、研究进展、包容不同声音和增加研究结果的相关性提供意见。
This study aimed to explore the decision‐making experience of patients with chronic kidney disease (CKD) and their caregivers. This was a qualitative descriptive study of the decision‐making experiences of individuals with stage 3—end‐stage CKD and their family caregivers. One‐on‐one, semistructured interviews were conducted using a guide developed and approved by a community advisory group. Data were analyzed using thematic analysis. Three themes were identified: (1) decisions triggered by declining health and broad in scope, (2) challenges to decision‐making and (3) factors influencing decision‐making. Participants' experiences with health‐related decision‐making demonstrated that decisions were triggered when health declined. Yet, decisions that impact disease progression were being made in stage 3. Decision‐making was made difficult due to lack of information, complex co‐morbidities, and poor resource utilization. However, the structure and nature of the medical appointment, supportive caregivers, and resources served to remove challenges. Decision‐support interventions must train patients and caregivers to be empowered participants in answer‐seeking behaviours upstream of advanced illness. This work was conducted in full collaboration with a community advisory board consisting of patients with CKD, caregivers and clinicians. These members are noted in the acknowledgement section, and those who worked with the team to develop the interview guide, study protocols, and manuscript preparation are included as authors. As part of their role, advisory members met monthly, providing input on recruitment, study progress, inclusion of diverse voices and added relevance to study findings.
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影响因子：
2
作者：
Gorawara-Bhat R;Graupner J;Molony J;Thompson K
通讯作者：
Thompson K
影响因子：
3.9
作者：
Barrett TM;Green JA;Greer RC;Ephraim PL;Peskoe S;Pendergast JF;Hauer CL;Strigo TS;Norfolk E;Bucaloiu ID;Diamantidis CJ;Hill-Briggs FF;Browne T;Jackson GL;Boulware LE;PREPARE NOW study investigators
通讯作者：
PREPARE NOW study investigators
影响因子：
120.7
作者：
Curtis, J. Randall;Back, Anthony L.;Engelberg, Ruth A.
通讯作者：
Engelberg, Ruth A.
影响因子：
13.2
作者：
Donald, Maoliosa;Beanlands, Heather;Hemmelgarn, Brenda R.
通讯作者：
Hemmelgarn, Brenda R.
影响因子：
2.3
作者：
Eneanya, Nwamaka D.;Labbe, Allison K.;Park, Elyse R.
通讯作者：
Park, Elyse R.