We're the Eyes and the Ears, but We Don't Have a Voice: Perspectives of Hospice Aides

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Abstract

Hospice aides are integral to the delivery of home hospice care and play an essential role in the effective communication and collaboration of the hospice interdisciplinary team. Despite their critical role, little is known about hospice aides' perceptions of their role in providing hospice services. This qualitative study explores hospice aides' perspectives of their work; their relationships with patients, families, and interdisciplinary team members; and their contributions to end-of-life care. Two focus groups of hospice aides (N = 13) and 16 hours of observation of in-home caregiving were conducted. Focus group data were inductively and iteratively coded, and three themes were identified: (1) “We're the eyes and ears,” (2) “We're kept out of the loop,” and (3) “We have no voice.” Aides described themselves as frontline providers based on the close relationships they formed with patients and family members yet felt underrecognized by members of the hospice team. Observational field notes were reexamined with themes to confirm convergence of qualitative and observational data. Better understanding of their role could enhance the integration of aides into patient- and family-centered team interactions, leading to both improved patient and family outcomes and retention and support of this critical component of the hospice workforce.

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