Project Details
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Times without care and encounters: Exploring the experiences of persons with dementia: A pluralist methodological approach

Subject Area Empirical Social Research
Term since 2021
Project identifier Deutsche Forschungsgemeinschaft (DFG) - Project number 458561353
 
People with dementia spend most of the day without care, without encounters, and usually without activity. Although this has been proven in numerous studies, there has not yet been any scientific debate on how people with dementia experience these periods of time. Such knowledge would be highly relevant for health professionals and relatives in order to develop adequate strategies for dealing with these periods of time. Our study is based on the fundamental Goffmanian question "What is it that's going on here?”. The study aims to reconstruct periods of time without care and encounters from the perspective of the persons with dementia and from the point of view of formal or informal carers in the institutional and domestic long-term care setting in Switzerland and Germany. It is our aim to elaborate a description of the effects and to typify the life-world-related understanding of time. In a survey, we will verify this typification. The study is designed as an explorative and sequential investigation using different methods. We reconstruct the periods of time without care and encounters within the project framework of 36 months using ethnographic methods and a survey. To ensure a description of different social and nursing cultures, practices and regulations, we will examine times without care and encounters across all stages of dementia in care facilities a) accomodating exclusively persons with dementia or b) persons with and without dementia, and c) in the home setting in German-speaking Switzerland and in Germany. For each setting, ten case studies are envisaged. We will conduct participant or non-participant observation, videography of selected situations as well as interviews with dementia-affected persons and caregivers. The data material will be coded according to the Grounded Theory methodology. In addition, selected text passages will be subject to hermeneutic sequence analysis. Video interaction analysis will serve to interpret the video material. To obtain complementary information relating to the typology, we will conduct a survey with about 400 formal and informal caregivers. We will combine ethnographical and survey findings in an overall concept of periods of time without care and encounters. Our interdisciplinary and transnational team is composed of researchers with expertise in nursing science, gerontology, sociology, psychology, and ethnography. The procedure outlined above allows us to make statements concerning the nature, frequency and prevalence of periods of time without care and encounters. In this way, we contribute to making the life-world of people with dementia visible. Our research provides the ground for representative research on periods of time without care and encounters, for the development of diagnostic instruments and for a critical examination of possibilities aiming to interrupt these periods, for example by means of action-guiding, expedient interventions.
DFG Programme Research Grants
International Connection Switzerland
 
 

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