Perception of diagnosis by family caregivers in severe brain injury patients in China

作者全名：Yan, Yifan; Li, Meiqi; Annen, Jitka; Huang, Wangshan; Cai, Tiantian; Wang, Xueying; Hu, Xiaohua; Laureys, Steven; Di, Haibo

作者地址：[Yan, Yifan; Li, Meiqi; Huang, Wangshan; Wang, Xueying; Di, Haibo] Hangzhou Normal Univ, Int Unrespons Wakefulness Syndrome & Consciousness, Hangzhou 310036, Peoples R China; [Yan, Yifan] Zhejiang Univ, Sch Publ Hlth, Hangzhou, Peoples R China; [Li, Meiqi] Hangzhou First Peoples Hosp, Dept Nursing, Hangzhou, Peoples R China; [Annen, Jitka; Laureys, Steven] Univ Liege, Coma Sci Grp, GIGA Consciousness, Liege, Belgium; [Annen, Jitka; Laureys, Steven] Univ Hosp Liege, Ctr Cerveau2, Liege, Belgium; [Di, Haibo] Hangzhou Normal Univ, Sch Basic Med, Hangzhou, Peoples R China; [Cai, Tiantian] Chongqing Med Univ, Dept Endocrinol, Affiliated Hosp 1, Chongqing, Peoples R China; [Hu, Xiaohua] Hosp Zhejiang Peoples Armed Pol, Dept Rehabil, Hangzhou, Peoples R China; [Laureys, Steven] Laval Univ, CERVO Brain Res Ctr, Quebec City, PQ, Canada; [Di, Haibo] Hangzhou Normal Univ, Dept Radiol, Affiliated Hosp, Hangzhou, Peoples R China

通信作者：Di, HB (通讯作者)，Hangzhou Normal Univ, Int Unrespons Wakefulness Syndrome & Consciousness, Hangzhou 310036, Peoples R China.; Di, HB (通讯作者)，Hangzhou Normal Univ, Sch Basic Med, Hangzhou, Peoples R China.; Di, HB (通讯作者)，Hangzhou Normal Univ, Dept Radiol, Affiliated Hosp, Hangzhou, Peoples R China.

来源：BMC PALLIATIVE CARE

ESI学科分类：SOCIAL SCIENCES, GENERAL

WOS号：WOS:001255495200003

JCR分区：Q2

影响因子：2.5

年份：2024

卷号：23

期号：1

开始页：　

结束页：　

文献类型：Article

关键词：Severe brain injury; Diagnosis; Ethics; Family caregivers; Decision-making

摘要：ObjectivesSurrogate decision-making by family caregivers for patients with severe brain injury is influenced by the availability and understanding of relevant information and expectations for future rehabilitation. We aimed to compare the consistency of family caregivers' perceptions with clinical diagnoses and to inform their expectation of prognosis in the future.MethodsThe Coma Recovery Scale-Revised was used to assess the diagnosis of inpatients with severe brain injury between February 2019 and February 2020. A main family caregiver was included per patient. The family caregiver's perception of the patient's consciousness and expectations of future recovery were collected through questionnaires and compared consistently with the clinical diagnosis.ResultsThe final sample included 101 main family caregivers of patients (57 UWS, unresponsive wakefulness syndrome, 37 MCS, minimally conscious state, 7 EMCS, emergence from MCS) with severe brain injury. Only 57 family caregivers correctly assessed the level of consciousness as indicated by the CRS-R, showing weak consistency (Kappa = 0.217, P = 0.002). Family caregivers' demographic characteristics and CRS-R diagnosis influenced the consistency between perception and clinical diagnosis. Family caregivers who provided hands-on care to patients showed higher levels of consistent perception (AOR = 12.24, 95% CI = 2.06-73.00, P = 0.006). Compared to UWS, the family caregivers of MCS patients were more likely to have a correct perception (OR = 7.68, 95% CI = 1.34-44.06). Family caregivers had positive expectations for patients' recovery in terms of both communication and returning to normal life.ConclusionNearly half of family caregivers have inadequate understanding of their relative's level of consciousness, and most of them report overly optimistic expectations that do not align with clinical diagnosis. Providing more medical information to family caregivers to support their surrogate decision-making process is essential.

基金机构：Key Project Zhejiang Provincial Natural Science Foundation [Z21H170001]; National Natural Science Foundation of China [81920108023]; National Key Research and Development Program of China [2022YFE0141300, 2022YFC3601200]; Interdisciplinary Research Project of Hangzhou Normal University [2024JCXK07]

基金资助正文：This work was supported by the Key Project Zhejiang Provincial Natural Science Foundation (Z21H170001), National Natural Science Foundation of China (81920108023), National Key Research and Development Program of China (No. 2022YFE0141300 and 2022YFC3601200). Interdisciplinary Research Project of Hangzhou Normal University (2024JCXK07).