Exploring the Experiences of Times Without Care and Encounters in Persons With Dementia in the Swiss and German Nursing Home and Domiciliary Care Settings: Protocol for an Ethnographic Multimethods Study

Article Article scientifique Article Exploring the Experiences of Times Without Care and Encounters in Persons With Dementia in the Swiss and German Nursing Home and Domiciliary Care Settings: Protocol for an Ethnographic Multimethods Study eng 2024-11-18 author Beer Thomas 0000-0002-7918-8362 Department of Health, Eastern Switzerland University of Applied Sciences, St.Gallen, Switzerland. 402261 author Hirt Julian 0000-0001-6589-3936 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.,Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle (Saale), Germany. 431953 author Adlbrecht Laura 0000-0002-7042-7523 Department of Health, Eastern Switzerland University of Applied Sciences, St.Gallen, Switzerland. 402263 author Lindwedel Ulrike 0000-0003-3529-9826 Faculty Health, Safety, Society, Furtwangen University, Furtwangen, Germany. 402266 author Dammert Matthias 0009-0004-4850-917X Department of Health Science, Fulda University of Applied Sciences, Fulda, Germany. 402267 author Maurer Carola 0000-0002-2731-7767 Department of Health, Eastern Switzerland University of Applied Sciences, St.Gallen, Switzerland. 402262 author Kliegel Matthias 0000-0002-2001-2522 Center for the Interdisciplinary Study of Gerontology and Vulnerability (CIGEV), University of Geneva, Geneva, Switzerland.,Department of Psychology, University of Geneva, Geneva, Switzerland.,Swiss National Center of Competences in Research LIVES-Overcoming vulnerability, Life-Course Perspectives, Lausanne and Geneva, Switzerland. 761733 Section de psychologie (PSICO) author König Peter 0000-0002-4376-0304 Faculty Health, Safety, Society, Furtwangen University, Furtwangen, Germany. author Bleses Helma M 0009-0008-6707-5169 Department of Health Science, Fulda University of Applied Sciences, Fulda, Germany. e58190 10.2196/58190 39556815 1929-0748 PMC11612575 https://www.researchprotocols.org/2024/1/e58190 Background: 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. Objective: 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. Methods: 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. Results: 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. Conclusions: 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. Dementia Ethnography Formal caregivers Home care services Home nursing Informal caregivers Nursing Nursing homes Dewey 150 Dewey 618.97 Swiss National Science Foundation Betreuungs- und begegnungsfreie Zeiträume: Methodenplurale Erkundungen zum Erleben von Personen mit Demenz 200919 CH Projects 14 Centre interfacultaire de gérontologie et d'études des vulnérabilités 0D6 108 Section de psychologie 71 false 1282 Centre LIVES 633 Cognitive Aging Lab (CAL) JMIR research protocols 13 d0c3918a-f356-46d9-b4c8-a6ea6255fd92 Article (Published version) Public resprot-2024-1-e58190.pdf 476538 application/pdf CC BY-4.0 6973e97573f80014c15da0873be1c7d58e08400053776199b3c29286deecf9d2 openAccess Centres et instituts / Centre interfacultaire de gérontologie et d'études des vulnérabilités Faculté de psychologie et des sciences de l'éducation / Section de psychologie

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Exploring the Experiences of Times Without Care and Encounters in Persons With Dementia in the Swiss and German Nursing Home and Domiciliary Care Settings: Protocol for an Ethnographic Multimethods Study	JMIR research protocols			2024	40	209

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