The Social Process and Changed Dynamics in the Co-Produced Care and Support to People Living With Dementia Within Healthcare Services: An Ethnographic Study

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.

Keywords

informal caregiving community and public health involvement co-production Scandinavian welfare state public caring arrangements

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