Rose Tanya A, Wallace Sarah J, Leow Sibin
School of Health and Rehabilitation Sciences, The University of Queensland , Brisbane , Australia.
Int J Speech Lang Pathol. 2019 Oct;21(5):470-482. doi: 10.1080/17549507.2019.1651396. Epub 2019 Aug 20.
: This study aimed to explore family members' experiences and preferences for receiving aphasia information during the early phases of post-stroke care. : Sixty-five family members completed an online survey structured according to five phases for caregiver support. The majority of participants were female (73.8%, = 48) and spouses/partners (81.5%, = 53) to a family member with aphasia. The quantitative data were analysed using descriptive statistics. The qualitative data were analysed using inductive content analysis. : Experiences: The majority of family members (≥50%) did not recall receiving aphasia information in four of the five phases and were not completely satisfied with information received in any phase. Preferences: Only three family members (4.6%) reported not wanting aphasia information and this pertained to the first days of care. Family members considered it useful to receive aphasia information in a written modality and via conversations with health professionals across all five phases. Family members identified difficulties obtaining aphasia information, including health professionals providing limited or inadequate information, not being aware of the term aphasia, and difficulties accessing services across care phases. : Findings provide insight into how health professionals can better support the information needs of family members living with aphasia.
本研究旨在探讨家庭成员在中风后护理早期阶段获取失语症信息的经历和偏好。65名家庭成员完成了一项根据照顾者支持的五个阶段构建的在线调查。大多数参与者为女性(73.8%,n = 48),是失语症患者的配偶/伴侣(81.5%,n = 53)。定量数据采用描述性统计进行分析。定性数据采用归纳性内容分析进行分析。经历:大多数家庭成员(≥50%)在五个阶段中的四个阶段都不记得收到过失语症信息,并且对任何阶段收到的信息都不完全满意。偏好:只有三名家庭成员(4.6%)表示不想要失语症信息,这与护理的最初几天有关。家庭成员认为在所有五个阶段以书面形式并通过与卫生专业人员交谈来获取失语症信息是有用的。家庭成员指出获取失语症信息存在困难,包括卫生专业人员提供的信息有限或不足、不知道失语症这个术语以及在护理各阶段获取服务存在困难。研究结果为卫生专业人员如何更好地支持失语症患者家庭成员的信息需求提供了见解。