Yan Yifan, Li Meiqi, Cai Tiantian, Wang Xueying, Dong Yan, Hu Xiaohua, Laureys Steven, Gosseries Olivia, Grégoire Charlotte, Di Haibo
International Vegetative State and Consciousness Science Institute, Hangzhou Normal University, Hangzhou, China.
School of Public Health, Zhejiang University, Hangzhou, China.
Qual Life Res. 2024 Feb;33(2):481-490. doi: 10.1007/s11136-023-03539-2. Epub 2023 Nov 16.
Long-term care of severe brain injury patients places a significant mental burden on family caregivers, yet few studies have reported the situation in China. We aimed to describe the mood states of family caregivers of patients with severe brain injury and examine the influencing factors that affect caregivers' moods.
Cross-sectional survey was used to assess the mood profiles of Chinese family caregivers between February 2019 and February 2020. Demographic data of caregivers and patients, the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder scale (GAD-7) were used to assess the level of depressive and anxiety symptoms. The quality of life score was also assessed by a visual analog scale, and the Coma Recovery Scale-Revised was used to assess the patient's consciousness.
One hundred and one patients with severe brain injury (57 unresponsive wakefulness syndrome, UWS) between the age of 14 and 70 and their main family caregivers were enrolled in the study. Most caregivers displayed depressive (n = 62) and anxiety symptoms (n = 65), with 17 and 20 of these family caregivers reporting (moderately) severe depressive symptom and severe anxiety symptom, respectively. The caregiver's depressive symptom level significantly decreased as the patient's injury lasted longer (r = - 0.208, P = 0.037). Moreover, the age of the patient negatively related to the levels of depressive (r = - 0.310, P = 0.002) and anxiety symptoms (r = - 0.289, P = 0.003) in caregivers. There was a significant positive correlation between anxiety and depressive symptoms scores in family caregivers (r = 0.838, P < 0.001). The higher the level of anxiety (r = - 0.273, P = 0.006) and depressive symptoms (r = - 0.265, P = 0.007), the worse the quality of life.
Many family caregivers of patients with severe brain injury experience various levels of anxiety and depressive symptoms in China. Tailor-made psychological help seems imperative. Researchers and doctors can provide information about patient's conditions to assist family members in discussing rehabilitation options for patients in different states of consciousness will help to ease anxiety of family caregivers.
重度脑损伤患者的长期护理给家庭照顾者带来了沉重的精神负担，但在中国鲜有研究报道这一情况。我们旨在描述重度脑损伤患者家庭照顾者的情绪状态，并探究影响照顾者情绪的因素。
采用横断面调查来评估2019年2月至2020年2月期间中国家庭照顾者的情绪状况。收集照顾者和患者的人口统计学数据，使用患者健康问卷（PHQ - 9）和广泛性焦虑障碍量表（GAD - 7）来评估抑郁和焦虑症状的程度。通过视觉模拟量表评估生活质量得分，并用昏迷恢复量表修订版评估患者的意识。
101名年龄在14至70岁之间的重度脑损伤患者（57例无反应觉醒综合征患者）及其主要家庭照顾者参与了本研究。大多数照顾者表现出抑郁（n = 62）和焦虑症状（n = 65），其中分别有17名和20名家庭照顾者报告有（中度）重度抑郁症状和重度焦虑症状。随着患者受伤时间延长，照顾者的抑郁症状水平显著降低（r = - 0.208，P = 0.037）。此外，患者年龄与照顾者的抑郁（r = - （此处原文有误，应为0.310），P = 0.002）和焦虑症状水平（r = - （此处原文有误，应为0.289），P = 0.003）呈负相关。家庭照顾者的焦虑和抑郁症状得分之间存在显著正相关（r = 0.838，P < 0.001）。焦虑水平（r = - 0.273，P = 0.006）和抑郁症状水平（r = - 0.265，P = 0.007）越高，生活质量越差。
在中国，许多重度脑损伤患者的家庭照顾者经历了不同程度的焦虑和抑郁症状。量身定制的心理帮助似乎势在必行。研究人员和医生可以提供有关患者病情的信息，以协助家庭成员讨论处于不同意识状态患者的康复选择，这将有助于缓解家庭照顾者的焦虑情绪。
