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We're the Eyes and the Ears, but We Don't Have a Voice

Perspectives of Hospice Aides

Lai, Djin BSN, RN; Cloyes, Kristin G. PhD, MN, RN; Clayton, Margaret F. PhD, APRN; Doyon, Katherine MS, RN; Reblin, Maija PhD; Beck, Anna C. MD; Ellington, Lee PhD

Journal of Hospice & Palliative Nursing: February 2018 - Volume 20 - Issue 1 - p 47–54
doi: 10.1097/NJH.0000000000000407
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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.

Djin Lai, BSN, RN, is PhD candidate, College of Nursing, University of Utah, Salt Lake City.

Kristin G. Cloyes, PhD, MN, RN, is associate professor, College of Nursing, University of Utah, Salt Lake City.

Margaret F. Clayton, PhD, APRN, is associate professor, College of Nursing, University of Utah, Salt Lake City.

Katherine Doyon, MS, RN, is PhD student, College of Nursing, University of Utah, Salt Lake City.

Maija Reblin, PhD, is assistant member, Department of Health Outcomes Behavior, Moffitt Cancer Center, Tampa, FL.

Anna C. Beck, MD, is professor of medical oncology, School of Medicine, University of Utah; and director of supportive oncology and survivorship, Huntsman Cancer Institute, Salt Lake City, UT.

Lee Ellington, PhD, is professor, College of Nursing, University of Utah, Salt Lake City.

Address correspondence to Djin Lai, BSN, RN, College of Nursing, University of Utah, 10 S 2000 E, Salt Lake City, UT 84112 (Djin.Lai@utah.edu).

The sixth author is employed at the home health and hospice agency from which the study participants were recruited from. The remaining authors have no conflicts of interest to disclose.

This work was funded in part by a University of Utah College of Nursing Research Committee grant to Dr Ellington as principal investigator. Ms Doyon was funded in part by NIH training grant T32NR013456, “Interdisciplinary Training in Cancer, Aging and End-of-Life Care.” For the other authors, none were declared.

© 2018 by The Hospice and Palliative Nurses Association.