Helping the helpers: Understanding information and support needs of caregivers in underserved communities

Informal caregivers caring for patients at the end of life in rural geographic areas may have inadequate support due to insufficient community-based palliative care services. We conducted a parallel mixed-methods study to understand informal caregivers' unmet supportive, educational, and informational needs living in rural areas with limited community-based palliative care services. Forty-four caregivers of loved ones that died at home between December 2017 and September 2020 completed the Carer Support Needs Assessment Tool (CSNAT) and 14 caregivers were interviewed. Using a parallel mixed analysis, results showed that caregiver distress was associated with unmet information needs about how to accurately assess and manage pain levels and identify signs and symptoms of end-of-life. Caregivers needed more support related to available, knowledgeable, and well-trained home health care providers, accessible equipment, 24-hour respite care, accessible grief counseling, and a central triage contact number for community support.