Here’s a sampling of some of the research projects in the Family Caregiving Institute.
Novel advanced illness care program
Associate Dean for Research Janice Bell was awarded $600,000 from the Rita and Alex Hillman Foundation Innovations in Care Program for a collaboration with faith-based organizations in Alameda County that address advanced illness care disparities through the Alameda County Care Alliance (ACCA) Advanced Illness Care Program.
Many caregiving programs are provided by service agencies, which lack the funding and expertise to conduct evidence-based research that determines the effectiveness of their interventions. The Institute’s program and policy evaluation unit, led by Heather M. Young and Janice Bell, brings decades of research expertise to the table. Through qualitative and quantitative methods, they assist agencies in understanding what in their organization works, what does not work and what the implications are for practice and policy.
The Family Caregiving Institute provided seed grants for up to $25,000 for pilot projects in 2020 and 2021. The first grants awarded in 2019 supported projects that advance family caregiving research. The second grants awarded in 2020 supported projects focused on family caregiving challenges posed by the COVID-19 pandemic.
Frailty and Physiological Caregiving Stress in Heart Failure Family Care Dyads: A Pilot Study
Principal investigator: Julie T. Bidwell
Frailty is a geriatric condition commonly defined as decreased physiologic reserves and increased vulnerability to stressors. This pilot study explores patient and caregiver frailty and caregiver stress in a diverse group of older adult heart failure care dyads (heart failure patients and their partners/spouses). The overall goal is to characterize frailty within the dyad and its relationship to physiologic caregiving stress, with particular focus on caregivers that may be at higher risk (women and African Americans).
Acceptability and Feasibility of a Tailored Video for Recruitment of African American and Black Dementia Caregivers
Principal investigator: Fawn Cothran
This study examines the acceptability and feasibility of a personalized video regarding caregiver stress for recruitment of African American and Black dementia family caregivers. The study seeks to determine the acceptability of a personalized video regarding caregiver stress and test the feasibility of a personalized video for recruitment of African American dementia family caregivers.
A Contextual Approach to Assessing Caregiver Trajectory and Outcomes
Principal investigator: Oanh Meyer
The goal of this project is to enroll caregivers of those with mild cognitive impairment (MCI) and dementia from our UC Davis Alzheimer’s Disease Center cohort as well as caregivers from the community. Using life course models and contextual approaches, researchers examined the effect of early life adversity and sociocultural factors such as familism, and their role on caregiver health and mental health.
Impacts of Social Isolation on Older Persons and their Caregivers During COVID-19
Principal investigator: Tina Kilaberia
This study explores how the COVID-19 pandemic impacted the lives of older persons and their caregivers. Researchers seek to understand especially the experiences related to social support, health care, loneliness and technology use.
Caregiving as Ethical Work: Understanding how Caregivers Meet the Ethical and Moral Challenges caused by the COVID-19 Pandemic
Principal investigator: Mark Fedyk
This project examines caregiver's descriptions of the experience of providing care, paying particular attention to the moral stress and ethical dilemmas that caregiving frequently involves. It does this by closely examining a database consisting of over 10,000 posts collected from public internet forums dedicated to the needs of caregivers. By closely examining the stories about ethical dilemmas in the database, as well as by carefully paying attention to trends in posts made both before and during the pandemic, the study hopes to shed light on specific and highly granular impacts that the pandemic has had on caregivers. Researchers seek to understand the creative solutions that caregivers developed to deal with the dilemmas of caregiving.
Pat Archbold and Barbara Stewart are nationally recognized experts in assessing caregiver skills and preparedness. Archbold is credited with offering the first conceptual model of family caregiving in research in 1980. Along with Stewart, she introduced the concept of preparedness in 1988. Their fundamental work in caregiving — developed while they were faculty at Oregon Health and Science University — now encompasses a massive suite of measurement and survey tools for family caregiving research. The Family Caregiving Institute serves as the repository of those tools. This allows the institute aggregate research across the country and gain new knowledge from others’ rigorous inquiries.