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

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 ( = 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 front-line providers based on the close relationships they formed with patients and family members, yet felt under-recognized 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 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.

Sustainable care: theorising the wellbeing of caregivers to older persons

“…Yet, relational issues of disrespect and discrimination are pervasive across work settings (Braedley et al, 2018). Residential care aides, for example, report tensions between expectations that they will form close relationships with patients and families and the under-recognition by members of the team of their efforts to navigate these relationships (Lai et al, 2018). Lack of recognition of support workers' contribution to society, and continued undervaluation of their work, adversely impacts those who provide care and those they care for (Hewko et al, 2015;George et al, 2017).…”

Delivering Hospice Care During the COVID-19 Pandemic

“…Aides have the most frequent contact with residents and their families, often developing close relationships. 26 Aides were not allowed in nursing homes to assist with daily living activities such as bathing and dressing for several months. 27 Nurses often have 1 to 2 weekly visits with their residents, depending on the plan established with the interdisciplinary team.…”

“…Before the limited visitation in nursing homes, many hospice aides provided frequent and sometimes daily visits to their residents to assist with daily living activities such as bathing and dressing. Aides have the most frequent contact with residents and their families, often developing close relationships 26 . Aides were not allowed in nursing homes to assist with daily living activities such as bathing and dressing for several months 27 .…”

Grief and Loss During Care Transitions: Experiences of Direct Care Workers

“…DCWs in their roles across the care continuum are central to meeting patient and family needs during these times. In hospice and palliative care, DCWs often have more consistent contact with patients and families than other team members (Wholihan & Anderson, 2013); yet, they feel excluded from care planning discussions (Lai et al, 2018). While many care transitions occur while the patient is still living (e.g., hospital or nursing facility discharges), their families and caregivers experience a final care transition from provided services when patients die.…”

“…While we have gleaned some perspective of how care transitions can impact patients and families, there is less insight into how these transitions impact DCWs. As DCWs are often overlooked in agencies (Staley et al, 2015) and as team members (Lai et al, 2018), insight into supporting DCWs during these transitions, individually and professionally, is needed. Existing literature suggests DCWs have a similar grief reaction to family caregivers (Boerner et al, 2015).…”