Beer Thomas, Hirt Julian, Adlbrecht Laura, Lindwedel Ulrike, Dammert Matthias, Maurer Carola, Kliegel Matthias, König Peter, Bleses Helma M
Department of Health, Eastern Switzerland University of Applied Sciences, St.Gallen, Switzerland.
Pragmatic Evidence Lab, Research Center for Clinical Neuroimmunology and Neuroscience Basel (RC2NB), University Hospital Basel and University of Basel, Basel, Switzerland.
JMIR Res Protoc. 2024 Nov 18;13:e58190. doi: 10.2196/58190.
Persons with dementia spend a large part of the day without care and encounters, often without activity, as confirmed by numerous studies. However, no scientific analysis has examined how persons with dementia experience these periods. Such knowledge would be highly relevant for health care professionals and relatives to develop adequate strategies for dealing with times without care.
We aim to reconstruct times without care and encounters in persons with dementia in the nursing home and domiciliary care settings and develop a typology. This typology will address the lifeworld understandings of time and the ways of arranging the time of persons with dementia.
Our study is designed as an explorative, sequential multimethods investigation. We aim to systematically reconstruct times without care and encounters over a period of 36 months using ethnographic methods. Afterward, we will examine the resulting typology using a survey. To describe different social and caring cultures, practices, and arrangements, we will analyze time periods across all phases of dementia in (1) institutions exclusively caring for persons with dementia, (2) institutions where persons with dementia and those without live together, and (3) domiciliary care. For each type of care, our target is 10 intensive case observations. These observations will occur in both participatory and nonparticipatory ways. We video record selected situations and conduct situational conversations and interviews with persons with dementia and nurses. We are aiming for a minimum sample of 30 persons with dementia plus their caregivers (ie, relatives of people with dementia and professional caregivers). We will analyze data according to grounded theory methodology. Furthermore, we will perform a hermeneutic sequence analysis of selected text passages. To interpret the video material, we will conduct a video interaction analysis. To obtain complementary information about the newly developed typology, we will survey approximately 400 formal and 150 informal caregivers. We will summarize the ethnography and survey findings into an overall concept of times without care and encounters in persons with dementia. To fulfill the research objectives, our cross-disciplinary and cross-country team comprises researchers with expertise in nursing sciences, gerontology, sociology, psychology, and ethnography.
Our approach allows formulating statements about the nature, frequency, and prevalence of times without care and encounters in people with dementia across countries and types of care. Thus, we will contribute to making visible the lifeworld of persons with dementia. Our study commenced in March 2022 and will conclude in May 2025. The results are expected to be published in the fall of 2025.
Our research offers points of departure for the representative investigation of times without care and encounters in persons with dementia, for the development of diagnostic instruments, and for dealing critically with possibilities of interruption (eg, by developing targeted interventions).
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/58190.
众多研究证实，痴呆症患者一天中的大部分时间无人照料且无社交互动，常常无所事事。然而，尚无科学分析探究痴呆症患者如何体验这些时段。此类知识对于医护人员和亲属制定应对无人照料时段的适当策略极为重要。
我们旨在重构养老院和居家护理环境中痴呆症患者无人照料且无社交互动的时段，并建立一种类型学。这种类型学将阐述对时间的生活世界理解以及痴呆症患者安排时间的方式。
我们的研究设计为探索性、序列多方法调查。我们旨在运用人种志方法，系统地重构36个月期间无人照料且无社交互动的时段。之后，我们将通过一项调查来检验所得的类型学。为描述不同的社会和护理文化、实践及安排，我们将分析痴呆症各个阶段在以下三种环境中的时间段：（1）专门照料痴呆症患者的机构；（2）痴呆症患者与非痴呆症患者共同居住的机构；（3）居家护理。对于每种护理类型，我们的目标是进行10次深入的案例观察。这些观察将以参与式和非参与式方式进行。我们对选定的情况进行视频记录，并与痴呆症患者及护士进行情境对话和访谈。我们的目标是至少抽取30名痴呆症患者及其照料者（即痴呆症患者的亲属和专业照料者）作为样本。我们将根据扎根理论方法分析数据。此外，我们将对选定的文本段落进行诠释学序列分析。为解读视频资料，我们将进行视频互动分析。为获取有关新建立的类型学的补充信息，我们将对约400名正式照料者和150名非正式照料者进行调查。我们将把人种志和调查结果总结为痴呆症患者无人照料且无社交互动时段的总体概念。为实现研究目标，我们的跨学科、跨国团队由在护理科学、老年医学、社会学、心理学和人种志方面具有专业知识的研究人员组成。
我们的方法能够就不同国家和护理类型中痴呆症患者无人照料且无社交互动时段的性质、频率和普遍性做出陈述。因此，我们将有助于使痴呆症患者的生活世界变得可见。我们的研究于2022年3月开始，将于2025年5月结束。预计结果将于2025年秋季发表。
我们的研究为对痴呆症患者无人照料且无社交互动时段进行代表性调查、开发诊断工具以及批判性地应对干扰可能性（例如通过制定有针对性的干预措施）提供了出发点。
国际注册报告识别码（IRRID）：DERR1-10.
