Magasi Susan, Buono Sarah, Yancy Clyde W, Ramirez Ricardo D, Grady Kathleen L
Department of Occupational Therapy and Department of Disability Studies, University of Illinois at Chicago (S.M.).
Department of Medical Social Sciences (S.B.), Northwestern University, Chicago, IL.
Circ Cardiovasc Qual Outcomes. 2019 Jan;12(1):e004414. doi: 10.1161/CIRCOUTCOMES.117.004414.
Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of life (QoL) of patients and their caregivers through the lens of preparedness and mutuality.
The sample included 30 MCS patients and their caregivers. Semistructured qualitative interviews about factors contributing to QoL were conducted with patients and caregivers and analyzed using a 2-phase thematic process. Caregiving impacts QoL of MCS patients and their caregivers long term. When there was limited time to engage in decision-making about MCS implantation, people entered MCS caregiving relationships naive to its full demands. Although most people adjusted to the task demands, MCS caregiving had a significant impact, both positive and negative, on interpersonal relationships. We applied the concepts of preparedness and mutuality to help frame the understanding of the emergent themes of forced choice, adjustment, gratitude, relationship change, strain, and burden (both caregiver and patient perceived). Availability of networks of support was identified as a crucial resource.
MCS caregiving affects QoL for both patients and caregivers. Specifically, preparedness, mutuality, and availability of supportive networks influence QoL of MCS patients and their caregivers. Caregiving relationships change over time. Long-term support by the MCS clinical team can help ensure that physical and emotional needs of MCS patients and caregivers are identified and addressed.
机械循环支持（MCS）患者的临床和美国监管指南要求确定一名护理人员来协助进行MCS护理。目前对于MCS护理对患者和护理人员的影响了解有限。本研究的目的是通过准备度和相互性的视角，探讨与MCS共同生活如何影响患者及其护理人员的生活质量（QoL）。
样本包括30名MCS患者及其护理人员。对患者和护理人员进行了关于影响生活质量因素的半结构化定性访谈，并采用两阶段主题分析方法进行分析。护理长期影响MCS患者及其护理人员的生活质量。当参与MCS植入决策的时间有限时，人们在对MCS护理的全部要求缺乏了解的情况下进入护理关系。尽管大多数人适应了任务要求，但MCS护理对人际关系产生了重大的积极和消极影响。我们应用准备度和相互性的概念来帮助构建对强制选择、调整、感恩、关系变化、压力和负担（护理人员和患者均感知到）等新出现主题的理解。支持网络的可用性被确定为一项关键资源。
MCS护理影响患者和护理人员的生活质量。具体而言，准备度、相互性和支持网络的可用性影响MCS患者及其护理人员的生活质量。护理关系随时间变化。MCS临床团队的长期支持有助于确保识别并满足MCS患者及其护理人员的身体和情感需求。
