Family Medicine and Primary Care, Lee Kong Chian School of Medicine, Nanyang Technological University Singapore, 11 Mandalay Road, Level 18, Clinical Science Building, Singapore, 308232, Singapore.
Lee Kong Chian School of Medicine, Nanyang Technological University Singapore, Singapore, Singapore.
BMC Geriatr. 2020 Feb 14;20(1):61. doi: 10.1186/s12877-020-1454-y.
People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia and caregivers' access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims to provide an overview of the information needs and information seeking behaviour of people with dementia and their non-professional caregivers.
We conducted a scoping review of the literature and searched four electronic databases for eligible studies published up to August 2018. Two reviewers independently screened studies and extracted data. Information needs were classified according to emerging themes in the literature, and information seeking behaviour was categorized using Wilson's model of information behaviour.
Twenty studies with a total of 4140 participants, were included in this review. Reported information needs focused on: (i) disease; (ii) patient care provision; (iii) healthcare services; and (iv) caregiver self-care. The most commonly reported information need was on healthcare service-related information. Characteristics found to influence information needs were the severity of dementia as well as patient and caregiver status. People with dementia and non-professional caregivers mainly displayed active searching, information seeking behaviour and preferred using electronic sources to obtain health information.
Current dementia information sources available in English are extensive in the information they offer, but more emphasis needs to be placed on healthcare service-related information. All studies originated from high income countries and focused on information needs of non-professional caregivers only. The only variables found to be associated to information needs were severity of dementia condition as well as patient/caregiver status. The information needs identified in this review can be used to inform development and design of future dementia resources for people with dementia and their non-professional caregivers.
痴呆症患者通常需要全职护理人员，尤其是在疾病晚期。痴呆症患者及其护理人员获取可靠的痴呆症信息至关重要，因为这可能对患者护理和生活质量产生重要影响。本研究旨在概述痴呆症患者及其非专业护理人员的信息需求和信息寻求行为。
我们对文献进行了范围综述，并在截至 2018 年 8 月的四个电子数据库中搜索了合格的研究。两名审查员独立筛选研究并提取数据。根据文献中出现的主题对信息需求进行分类，并用威尔逊的信息行为模型对信息寻求行为进行分类。
本综述共纳入 20 项研究，共 4140 名参与者。报告的信息需求集中在：（i）疾病；（ii）患者护理提供；（iii）医疗保健服务；和（iv）护理人员自我护理。最常报告的信息需求是与医疗保健服务相关的信息。影响信息需求的特征是痴呆症的严重程度以及患者和护理人员的状况。痴呆症患者及其非专业护理人员主要表现出积极的搜索、信息寻求行为，并更喜欢使用电子资源获取健康信息。
目前提供的英文痴呆症信息来源在提供的信息量方面非常广泛，但需要更加重视与医疗保健服务相关的信息。所有研究均来自高收入国家，仅关注非专业护理人员的信息需求。唯一发现与信息需求相关的变量是痴呆症严重程度以及患者/护理人员状况。本综述中确定的信息需求可用于为痴呆症患者及其非专业护理人员提供未来痴呆症资源的开发和设计提供信息。
