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

Death Stud. 2024;48(4):361-370. doi: 10.1080/07481187.2023.2230551. Epub 2023 Jul 10.

Abstract

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.

MeSH terms

  • Caregivers* / psychology
  • Educational Status
  • Humans
  • Needs Assessment
  • Palliative Care / psychology
  • Social Support
  • Terminal Care* / methods