The Importance of Providing Training to Informal Caregivers of Hospice Patients: Caregiver Experience With Hospice Care Based on Consumer Assessment of Healthcare Providers & Systems Surveys

Abstract

Background: Informal caregivers aid hospice patients at the end of life. Little is known of their preparation and confidence in providing care, and how this relates to experiences of hospice care.

Objective: Examine factors associated with informal caregivers' rating of home hospice care.

Methods: Data come from 828 completed CAHPS® surveys mailed between January 2022 and December 2023 from a single non-profit Hospice organization. Multivariate logistic regression analyses examined the independent influence of various aspects of hospice care on ratings of hospice.

Results: Nine of every 10 respondents rated hospice care high (9 or 10). Most aspects of hospice care were rated favorably. Nearly all respondents felt the patient was treated with dignity and respect (96%). The measure with the greatest room for improvement was getting help as soon as needed (82% "always"). Multivariate analyses revealed 6 factors that independently predicted overall rating of hospice care. The strongest predictor was always getting help as soon as needed, followed by believing the hospice team cared about the patient. Three measures of caregiver training were significantly associated with higher ratings of hospice care being trained to: safely move the patient, what to do if patient became restless, and on pain medications.

Conclusions: When informal caregivers feel trained to assess and manage the symptoms, they rate hospice care more favorably. Greater attention to informal caregiver training and support are imperative to improving hospice care.

Keywords: caregiver training; family caregivers; hospice CAHPS; hospice care; hospice experience; symptom management.