Author: 
Chandylen Nightingale, Ph.D.

Rural Caregiving in the United States

Nearly 40 million individuals are providing informal (unpaid) care for an adult family member or friend in the United States. Caregivers serve as vital members of the health care team by optimizing patient care in the community and reducing burden on the health care system; however, informal caregivers face tremendous challenges when caring for their loved ones and themselves.

Studies have overwhelmingly demonstrated a negative impact on cancer caregivers, including poor quality of life, risk of clinical depression, sleep disturbance, fatigue, pain, loss of physical strength, loss of appetite, and weight loss. Caregivers are tasked with providing emotional support to the care-recipient, navigating the complex healthcare system, and providing hands-on medical care, often with little or no training. Despite these challenges, many caregivers also report valuing their role and feeling a sense of purpose when caring for their loved ones.

The challenges caregivers face when trying to accomplish these tasks may be heightened for caregivers residing in rural areas. A 2006 joint report from the National Alliance for Caregiving and the Easter Seals Disability Services, “Caregiving in Rural America,” showed that 16 percent of caregivers live in a rural location.

With increasing awareness of caregiver needs, resources and interventions have been developed to provide skills training on patient medical care, promote caregiver self-care, teach stress-management strategies, and more, and such interventions have shown promising outcomes for patients and caregivers. Although caregivers have shown interest in supportive care services, caregivers residing in rural areas are less likely to use these services.  

According to the 2006 report, compared to urban and suburban caregivers, rural caregivers are less likely to take part in a support group, use transportation services, make use of respite services or adult day centers, and use an aide or nurse through an agency.

Several factors may serve as barriers that prevent rural caregivers from using supportive care resources. For example, rural communities may be limited in fiscal resources and infrastructure and thus be less likely to offer supportive care services compared to urban or suburban communities. Access to health care may also be limited in rural settings, forcing caregivers to travel greater distances or forgo needed services.  Complicating matters, 75 percent of rural caregivers live separately from the patient, exacerbating travel challenges. Residing in rural settings may also lead to difficulty accessing help from family and friends who do not live nearby.

Finally, rural caregivers may have attitudes and beliefs that prevent them from seeking supportive care services. Examples include perceiving stigma or feeling guilt for seeking help and receiving services, valuing self-reliance, and reluctance to seek help when not in crisis. Similarly, rural caregivers may also believe that family members should be responsible for their loved one’s care.

Addressing needs for rural caregivers is important not only for caregiver well-being, but also for the well-being of their loved ones. Unique strategies may be needed to address the needs of rural caregivers. Strategies may include telehealth approaches to combat distance barriers and self-management programs that allow caregivers to learn skills on their own, thereby circumventing perceived stigma associated with seeking professional help. Additionally, engaging local stakeholders in media campaigns may help shift attitudes and beliefs that currently prevent rural caregivers from seeking and accepting help.

Dr. Chandylen Nightingale is an Assistant Professor at Wake Forest School of Medicine, Department of Social Sciences and Health Policy. Dr. Nightingale conducts behavioral research in the area of cancer survivorship with a focus on developing and evaluating scalable supportive care interventions for patients with cancer and their informal caregivers. Her research emphasizes medically underserved populations such as head and neck cancer and lung cancer patient-caregiver dyads.