Hughes Anne K, Cummings Cristy E
School of Social Work, Michigan State University, East Lansing, MI, USA.
University of North Florida, Jacksonville, FL, USA.
J Patient Exp. 2020 Dec;7(6):1219-1226. doi: 10.1177/2374373520967796. Epub 2020 Oct 21.
Despite a focus on physical and cognitive outcomes, stroke survivors are also impacted by emotional and mental health challenges. Additionally, their caregivers may experience decreased well-being due to increased burden and role adjustment. A small body of literature characterizes this experience as a form of grief and loss. This study seeks to explore experiences of grief and loss reported by stroke survivors and caregivers, using Holbrook's 4-stage bereavement model. This cross-sectional, qualitative study was conducted among adult stroke survivors (n = 9) and their spousal caregivers (n = 5). Focus groups on experiences of recent hospitalizations and transitions home were transcribed, coded, and thematic analysis was conducted, identifying a major theme of loss. Data were reanalyzed guided by Holbrook's model. Common themes were losses and changes experienced by patients/caregivers, disbelief, and lack of understanding. Subthemes of denial and confusion were present. Less prevalent themes were loss of existing support systems and silver lining. Stroke survivors and caregivers experienced a range of negative emotions, impacting behaviors, self-perception, roles, and social support. Awareness of these issues can improve practice with those affected by stroke.
尽管关注身体和认知方面的结果，但中风幸存者也受到情绪和心理健康挑战的影响。此外，他们的照顾者可能会因负担加重和角色调整而幸福感下降。一小部分文献将这种经历描述为一种悲伤和失落的形式。本研究旨在利用霍尔布鲁克的四阶段丧亲模型，探索中风幸存者和照顾者所报告的悲伤和失落经历。这项横断面定性研究在成年中风幸存者（n = 9）及其配偶照顾者（n = 5）中进行。对关于近期住院经历和回家过渡的焦点小组讨论进行了转录、编码，并进行了主题分析，确定了一个主要的失落主题。数据在霍尔布鲁克模型的指导下进行了重新分析。常见主题包括患者/照顾者经历的失落和变化、怀疑以及缺乏理解。存在否认和困惑的子主题。不太常见的主题是现有支持系统的丧失和一线希望。中风幸存者和照顾者经历了一系列负面情绪，影响了行为、自我认知、角色和社会支持。意识到这些问题可以改善对中风患者及其照顾者的护理。
