Caregiver engagement enhances health outcomes of chronically ill adults

INDIANAPOLIS – Led by Regenstrief Institute Research Scientist Kristin Levoy, PhD, MSN, R.N., a meta-analysis of findings from 54 studies (involving more than 31,000 individuals) confirms that caregiver engagement across healthcare transitions (for example from hospital to home) of chronically ill adults is instrumental in preventing rehospitalizations, and holds potential for enhancing other patient outcomes.

The work adds compelling empirical evidence of the value of caregivers in facilitating care transitions when the healthcare team actively partners with them to support the patient’s healthcare following discharge. This not only included engaging caregivers in needs assessments and education (e.g., disease and medication management, red flag recognition) prior to discharge, but also telemedicine follow-up post-discharge to support caregivers in care coordination with other healthcare providers or supportive services.

“In my own clinical practice, I have had multiple experiences of caregivers coming to me after a healthcare crisis of their loved ones to reflect on how they didn’t feel adequately prepared to support their loved ones’ care,” said Dr. Levoy, who is also an assistant professor at Indiana University School of Nursing. “These caregivers felt blindsided by how much care they had to provide and ill-equipped for the weighty healthcare decisions they were involved in.

“Caregivers play a critical role in enhancing patient outcomes and we can do a better job of supporting these unrecognized members of the healthcare team,” she added. “Caregivers often feel abandoned, particularly in times of healthcare crises, like an unexpected hospitalization, and we need to set them up for success, which includes addressing their unique needs. And these needs only grow greater as the chronic illness advances and the patient’s disease and treatment complexity increases.”

As adults age with chronic illness, negative changes in health status may result in frequent and often sudden transitions across healthcare settings, such as from home to hospital and back to home or to a skilled nursing facility. On average, older adults will experience between two and five healthcare transitions in the year following a hospitalization.

Dr. Levoy calls for further study of healthcare delivery models that make caregivers actual partners in the healthcare process by supporting the care they provide to keep a chronically ill loved one from boomeranging back to the hospital.

“Caregiver Engagement Enhances Outcomes Among Randomized Control Trials of Transitional Care Interventions -- A Systematic Review and Meta-analysis” is published in Medical Care, a peer reviewed journal of the American Public Health Association. Authors, in addition to Dr. Levoy, are Eleanor Rivera, PhD, R.N., University of Illinois Chicago College of Nursing; Alexandra Hanlon, PhD, Virginia Tech College of Science; and Molly McHugh, BSN, R.N.; Karen B. Hirschman, PhD, MSW; and Mary D. Naylor, PhD, R.N., all of University of Pennsylvania School of Nursing.

The authors wrote, “Increasing support for caregiver engagement during care transitions may require the development of value-based reimbursement models that reward health care systems for the adoption of caregiver-engaged principles, creating an environment for systemic change in the way health care systems conduct business, which may also increase the capability of caregivers to provide care in the home over time, thus, delaying institutionalization.”

They conclude, “Whether in research or clinical practice, transitional care should not be conducted without careful consideration of where and how caregivers will be incorporated and supported as active partners in optimizing patient care across health care transitions.” 

The study was supported by the National Institutes of Health’s National Institute of Nursing Research award T32NR009356.

About Kristin Levoy, PhD, MSN, R.N.  

In addition to her role as a research scientist in the IU Center for Aging Research at Regenstrief Institute, Dr. Levoy is an assistant professor at Indiana University School of Nursing and an associate member of the Indiana University Melvin and Bren Simon Comprehensive Cancer Center.

About Regenstrief Institute

Founded in 1969 in Indianapolis, Regenstrief Institute is a local, national and global leader dedicated to a world where better information empowers people to end disease and realize true health. A key research partner to Indiana University, Regenstrief and its research scientists are responsible for a growing number of major healthcare innovations and studies. Examples range from the development of global health information technology standards that enable the use and interoperability of electronic health records to improving patient-physician communications, to creating models of care that inform practice and improve the lives of patients around the globe.

Sam Regenstrief, a nationally successful entrepreneur from Connersville, Indiana, founded the institute with the goal of making healthcare more efficient and accessible for everyone. His vision continues to guide the institute’s research mission.

About IU School of Nursing

Indiana University School of Nursing is one of the largest nursing schools in the nation that offers a full range of programs from undergraduate to doctoral. Over 22,500 IUSON alumni across the globe are empowered to be leaders in clinical practice, research, education, and innovation. The School’s Master’s and DNP programs were named to the U.S. News & World Report list of 2023 Best Graduate Nursing Schools, and the National League for Nursing has designated the School as a Center of Excellence in Nursing Education in two areas.