Research shows strain on families of nursing home patients during pandemic

Researchers from the School of Nursing have found that relatives of nursing homes patients during the COVID-19 crisis endured life-changing and fundamental family challenges because of restrictions enforced during the pandemic.

The research team, led by principal investigator Yu-Ping Chang, professor and senior associate dean in the School of Nursing, grouped its research and subsequent conclusions into four themes:

• Even when family members had previously cared for their loved ones at home or in nursing homes, they had to shift to rely entirely on nursing home staff to care for their loved ones and provide updates on their health.
• Pandemic stress magnified existing family relationship dynamics, strengthening positive family dynamics and exacerbating pre-existing tensions.
• Family members maintained connections with residents through creative alternatives for communication, visits and providing goods and services when habits and routines were disrupted.
• Family members felt powerless to provide care and companionship, particularly when they were knowledgeable about and capable of meeting residents’ needs but were not permitted to enter nursing homes.

The study, “COVID-19 Experiences of Relatives of Nursing Home Residents,” has been published in SAGE Journals. The authors include first author Cristina B. de Rosa and Yanjun Zhou, both PhD students in the nursing school.

“We wanted to understand how family members of nursing home residents dealt with being physically separated from their loved ones during the pandemic,” says de Rosa. “How did it affect them emotionally and psychologically? What did they do to cope? What did they do to keep connected with their loved ones residing in nursing homes during COVID-19?”

Family members with relatives in nursing homes during the pandemic wanted to go beyond receiving updates and information about their loved ones, according to the researchers. They wanted to actively participate in their loved ones’ lives.

“Family members expressed concern not only for residents’ physical health, but for their emotional comfort and overall well-being as well,” Chang says. “Our findings provide a better understanding of the impact of COVID-19 on family members of residents in nursing homes, especially the stress, anxiety and frustration they went through.

“In the future, visiting policies should incorporate family members as essential to the holistic care of residents in a safe, feasible way.”

COVID-19 in U.S. nursing homes first became an issue in January 2020, when it was identified in a long-term care facility in the state of Washington. Although positive cases of COVID-19 among residents of nursing homes have accounted for 5% of the total cases in the U.S., they represent a disproportionate 31% of deaths attributable to the disease.

The researchers, all professional nurses, acknowledged that policies prioritizing the physical well-being of older adults have been necessary to protect the health and safety of this population. But they also realized these protective policies may have unintended negative impacts as well.

“Closing nursing homes to visitors separates residents from their families and friends. Isolation, quarantine and personal protective equipment (PPE) that obscures facial expressions and muffles speech further limits human interaction of all kinds,” according to the study.

“Separation from loved ones and the uncertainty of crisis could cause anger, loneliness, fear, anxiety or other unexpected feelings or reactions,” de Rosa says. “Family members of nursing home residents are often excluded from discussions regarding potential changes in care, but in many cases these family members have provided care for residents prior to their transition to the facility and may still maintain expectations of being able to provide care and personal contact.”

Residents in long-term care facilities have been recognized as among those most vulnerable during this pandemic, Chang explains. “Safety protocols for facility lockdowns and social isolation (visit limitations) from friends and family have further worsened these residents’ mental health,” she says.

“As a gerontologist, I have been working in research on family caregiving. I wanted to know more about family members’ experiences in managing and coping with this situation.”