The Social Process and Changed Dynamics in the Co-Produced Care and Support to People Living With Dementia Within Healthcare Services
An Ethnographic Study
Bibliographic Data
| ID | 4710046 |
|---|---|
| Authors | Barbara Egilstrøð (0000-0001-5645-5547, Aalborg University, corresponding author), Henrik Vardinghus-Nielsen (Aalborg University), Henrik Vardinghus‐Nielsen (0000-0003-2228-6794, Aalborg University), Lars Skov Henriksen (0000-0001-9640-2773, Aalborg University), Marianne Stistrup Frederiksen (0000-0003-2504-7094, Department of Public Health, Southern University, Esbjerg, Denmark), Kirsten Schultz Petersen (0000-0002-5320-3210, Aalborg University) |
| Year | 2025 |
| Pages | 10497323251330998-10497323251330998 |
| Publication date | 2025-05-17 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Qualitative Health Research (JOURNAL) |
| Journal identifiers | ISSN: 1049-7323 • E-ISSN: 1552-7557 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/10497323251330998 |
| PMID | 40381188 |
| OpenAlex | W4410457258 |
| Language | EN |
| References cited | 34 |
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
Dementia · Ethnography · Health care · Political science · Qualitative research · Social care · Social science · Sociology · Computer Science · Geriatric Care and Nursing Homes · Healthcare innovation and challenges · Medicine · Mental Health and Patient Involvement · Nursing · Psychology · Gerontology
Family caregivers of people with dementia
Definitions of Co-Production and Co-Creation
Caregiver burden for informal caregivers of patients with dementia
Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research
Relational welfare
Prenatal Care Use Among Women of Low Income
Reflecting on reflexive thematic analysis
Interviews – Learning the Craft of Qualitative Research Interviewing
Justifying Knowledge, Justifying Method, Taking Action
Involving the Person with Dementia in Crisis Planning
Coproducing care and support delivery in healthcare triads
Time for a change
Family relationships and dementia
Using thematic analysis in psychology
Beyond Engagement and Participation
| Citation velocity | historical |
|---|---|
| Highly cited | No |