Researchers Uncover Widespread Disparities Affecting Rural Hospice Caregivers

Lagging supportive services around social determinants of health and limited access to hospice and palliative care are driving disparities among rural family caregivers.

Rural caregivers are more vulnerable to adverse emotional health impacts than others due to their remote locations, researcher Arienne Patano, PhD student at Michigan State University, said at the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice & Palliative Nurses Association (HPNA) Annual Assembly.

“Particularly those [caregivers] in rural areas experience unique challenges, as they have limited access to support and hospice and palliative care services because of their distant location,” Patano said. “Family caregivers in rural areas are more likely to experience social determinants of health that negatively affect the provision of palliative and end of life care. These determinants, along with the natural stressors of palliative and end-of-life caregiving, disproportionately impact their emotional well-being.”


Researchers from Michigan State University’s School of Nursing recently dug into the geographic and psychosocial challenges that rural family caregivers experience when providing community-based palliative and hospice care.

The researchers’ analysis spanned the experiences of 1,470 caregivers across 18 studies from 2010 to 2023. Published in the Journal of Palliative Medicine, the analysis found that a lack of supportive services that address social determinants of health can negatively impact rural caregivers’ decision making.

The researchers also found adverse outcomes tied to social determinants of health and rural caregivers’ ability to communicate with clinicians and manage patient symptoms.


“As a result of their limited access to health care, we saw an increased burden due to the lack of respite and a shortage of qualified clinicians, as well as feelings of burnout and resentment toward their role and responsibility,” Patano said.

Caregivers in remote areas can have lower levels of health literacy and awareness of medical terminology, challenging the ability to understand and monitor patients’ pain and symptoms, the analysis found. Financial vulnerabilities affecting health care coverage and underdeveloped infrastructures were additional factors challenging rural caregivers.

Rural caregivers often reported emotional distress related to pain and symptom management and limited opportunities for respite support, researchers indicated in the analysis.

Having hospice and palliative care resources available alongside community-based social supports helped improve caregiver outcomes, according to Patano.

“One facilitator was social cohesion within the community,” Patano stated. “We saw that consistent support from clinicians and programs offering respite provided great relief to these family caregivers. We saw many geographic and psychosocial challenges that these caregivers experience and coupled with their caregiver burden and emotional well-being. This often hampers some outcomes related to mental health constructs. It is important to note that community social cohesion influenced their awareness of services, hospice service, utilization and care seeking behaviors. And this really facilitated their caregiving in rural areas.”

Companies featured in this article: