Geographic location and individual circumstances can impact caregiver's health, study finds

Roughly a quarter of adults in the U.S. are caring for elderly family members or children with an illness or disability - and sometimes both at the same time. Despite family caregiving consuming time and resources for both individuals and governments, social scientists don't fully understand how it affects the people who do the caregiving, according to a team led by researchers at Penn State. In collaboration with colleagues at Purdue University and the University of Minnesota, the researchers conducted an expansive study of caregiver well-being, finding that the type of geographic location and individual circumstances can impact a caregiver's health, comfort and happiness even more than their state's family care policies.

In findings recently published in Rural Sociology, the researchers reported that rural and suburban caregivers were more likely to have low or medium well-being, and less likely to have high well-being compared to urban caregivers. And caregivers' personal characteristics - such as age, income and education - had a stronger effect on their well-being than the family care policies of the state they live in. However, the researchers concluded, family-care policies can make a difference in well-being when they take into account the differences among rural, suburban and urban areas - especially in terms of available support and infrastructure.

Although caregiving can be an emotionally rewarding and satisfying experience, caregivers often face significant stress and challenges in their roles, and the impacts of caregiving on well-being are often overlooked by researchers and policymakers."

Elena Maria Pojman, first author on the paper and doctoral degree candidate in sociology and demography in the Department of Sociology and Criminology at Penn State

To understand caregiver well-being more clearly, including how it differs among rural, suburban and urban caregivers, the researchers used two publicly available datasets. One was the caregiving survey from the North Central Regional Development Center and is a collaboration with the Northeast Regional Center for Rural Development, which is based at Penn State. This survey includes survey responses from 4,620 caregivers about their lived realities looking after either children or adults in the North Central and Northeast regions of the United States. The other dataset was from a group of researchers at the University of North Carolina at Chapel Hill, and it includes information about state-level programs and policies connected to the availability of services such as respite care, daycare, special transportation and state-paid leave from their jobs for caregiving.

By merging these two datasets for the current study, the researchers assessed how caregivers are doing and whether state-level policies - laws and programs related to family care - play a role in caregiver well-being. First, the team's analysis revealed that caregivers could be grouped by well-being ratings of high, medium or low, based on how they responded to several facets of their well-being: happiness, self-rated health and how caregiving has affected their physical health, mental/emotional health and social life. Then, the researchers used a statistical technique that predicts probability of an outcome with more than two categories to analyze how likely people from rural, suburban or urban areas were to fall into each category.

The researchers concluded rural and suburban caregivers were more likely to have lower well-being than urban caregivers, but the overall differences among the three were small. However, Pojman pointed out, the analysis indicated that suburban caregivers were more like rural caregivers than urban ones - which contradicts previous research by other scientists that grouped suburban and urban caregivers together.

"Suburban caregivers often face unique challenges stemming from their geographical and social position, which differ from the issues experienced in urban or rural environments," Pojman said, explaining that the study highlighted the need for better-targeted policies and resources. "Balancing caregiving with work, parenting and personal needs is often compounded by suburban-specific factors such as limited public transit and the isolation that comes from living in more spread-out communities."

The researchers also concluded that support systems are crucial - caregivers who had access to paid help and community support specific to caregiving tended to have higher well-being. Less specific support, like broad federal programs, was more weakly linked to high well-being. This suggests that policy should focus on making caregiving-specific supports more accessible, explained team leader and senior author, Florence Becot, Nationwide Insurance Early Career Professor of Agricultural Safety and Health Program Lead in Penn State's College of Agricultural Sciences

"Although caregiving can be an emotionally rewarding and satisfying experience, caregivers often face significant stress and challenges in their roles, and the impacts of caregiving on well-being are often overlooked by researchers and policymakers," she said. "Caregivers often report a complex range of feelings regarding the care they provide and its impact on their life, ranging from immense financial and emotional burdens, to joy and personal growth. There's a clear need for better family-care policies that reflect the real differences in support needs across rural, suburban and urban areas - especially to help those caregivers who are struggling."

Because caregiving experiences vary so much, it's important to consider caregiver well-being in a nuanced and individualized way, Becot added.

"Understanding the challenges caregivers face in different social, demographic and geographic contexts and circumstances helps researchers, health care providers and policymakers better support caregivers - especially those at risk of burnout or emotional distress," she said.

Zuzana Bednarik, North Central Regional Center for Rural Development, Purdue University, and Carrie Henning-Smith, School of Public Health, University of Minnesota, contributed to the research.

Funding for this research was provided by The Nationwide Insurance Endowment in Penn State's College of Agricultural Sciences; the North Central Centers for Rural Development; the Northeast Regional Centers for Rural Development; the U.S. Department of Agriculture's National Institute of Food and Agriculture; North Central Regional Association of State Agricultural Experiment Station Directors; and North Central Cooperatives of Extension Association.