Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers

Author:

Saragosa Marianne1ORCID,Jeffs Lianne2,Okrainec Karen3,Kuluski Kerry4

Affiliation:

1. Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto; Sinai Health, Canada

2. Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto; Sinai Health; Lunenfeld-Tanenbaum Research Institute, Canada

3. Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto; Open Lab, University Health Network; Division of General Internal Medicine, University Health Network; Department of Medicine, University of Toronto, Canada

4. Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto; Institute for Better Health, Trillium Health Partners, Canada

Abstract

Older adults living with dementia are at risk for more complex health care transitions than individuals without this condition, non-impaired individuals. Poor quality care transitions have resulted in a growing body of qualitative empirical literature that to date has not been synthesized. We conducted a systematic literature review by applying a meta-ethnography approach to answer the following question: How do older adults with dementia and/or their caregivers experience and perceive healthcare transition: Screening resulted in a total of 18 studies that met inclusion criteria. Our analysis revealed the following three categories associated with the health care transition: (1) Feelings associated with the healthcare transition; (2) processes associated with the healthcare transition; and (3) evaluating the quality of care associated with the health care transition. Each category is represented by several themes that together illustrate an interconnected and layered experience. The health care transition, often triggered by caregivers reaching a “tipping point,” is manifested by a variety of feelings, while simultaneously caregivers report managing abrupt transition plans and maintaining vigilance over care being provided to their family member. Future practice and research opportunities should be more inclusive of persons with dementia and should establish ways of better supporting caregivers through needs assessments, addressing feelings of grief, ongoing communication with the care team, and integrating more personalized knowledge at points of transition.

Publisher

SAGE Publications

Subject

General Social Sciences,Sociology and Political Science,General Medicine

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