The Social Process and Changed Dynamics in the Co-Produced Care and Support to People Living With Dementia Within Healthcare Services: An Ethnographic Study.
IF 2.6 2区 医学Q2 INFORMATION SCIENCE & LIBRARY SCIENCE
Barbara Egilstrøð, Henrik Vardinghus-Nielsen, Lars Skov Henriksen, Marianne Stistrup Frederiksen, Kirsten Schultz Petersen
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引用次数: 0
Abstract
Family caregivers are pivotal contributors to home-based care and support for home-dwelling people with dementia. While previous research focused on family caregiving as a separate domain from professional caregiving, this study aims to investigate the situated co-produced family caregiving, capturing family caregivers' negotiations and co-produced roles in the meeting with healthcare professionals for home-dwelling people with dementia. Employing an ethnographic approach, we conducted field visits, attended 15 dialogue meetings, and conducted 15 interviews in a Danish municipality, providing dialogue meetings with home-dwelling people with dementia and their families. In total, 42 people participated: 23 family caregivers, 14 people with dementia, and five dementia coordinators. Families' negotiations and co-produced roles forming the situated co-produced family caregiving in the meeting with healthcare professionals were thematically analyzed using Erving Goffman's sociological theory of frontstage and backstage scenes. We constructed three phases illustrating the time-changing dynamics and shifts in the co-produced care between the family caregiver, the person with dementia, and the healthcare professional: Phase 1: Negotiating participation in dementia assessment; Phase 2: Supported co-production; and Phase 3: Negotiating receding home-based co-produced family caregiving. This study contributes to the perception of user co-production by highlighting the situated co-produced family caregiving, capturing the complex negotiation process and co-production roles over time. Acknowledging this dynamic can facilitate better support for family caregivers and enhance home-based dementia care practices. A panel group was involved in a public involvement process and contributed perspectives on family caregiving in the meeting with healthcare professionals.
期刊介绍：
QUALITATIVE HEALTH RESEARCH is an international, interdisciplinary, refereed journal for the enhancement of health care and to further the development and understanding of qualitative research methods in health care settings. We welcome manuscripts in the following areas: the description and analysis of the illness experience, health and health-seeking behaviors, the experiences of caregivers, the sociocultural organization of health care, health care policy, and related topics. We also seek critical reviews and commentaries addressing conceptual, theoretical, methodological, and ethical issues pertaining to qualitative enquiry.
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