Lai Djin, Cloyes Kristin G, Clayton Margaret F, Doyon Katherine, Reblin Maija, Beck Anna C, Ellington Lee
University of Utah, College of Nursing, Salt Lake City, UT, US.
Department of Health Outcomes and Behavior, Moffitt Cancer Center, Tampa, FL, US.
J Hosp Palliat Nurs. 2018 Feb;20(1):47-54. doi: 10.1097/NJH.0000000000000407.
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.
临终关怀助理对于提供家庭临终关怀服务至关重要，并且在临终关怀跨学科团队的有效沟通与协作中发挥着重要作用。尽管他们作用关键，但对于临终关怀助理如何看待自己在提供临终关怀服务中的角色却知之甚少。这项定性研究探讨了临终关怀助理对其工作的看法、他们与患者、家属及跨学科团队成员的关系，以及他们对临终护理的贡献。研究对两组临终关怀助理（n = 13）进行了焦点小组访谈，并对16小时的居家护理进行了观察。焦点小组数据经过归纳和反复编码，确定了三个主题：1）“我们是耳目”，2）“我们被排除在圈子之外”，3）“我们没有发言权”。助理们基于与患者和家属建立的密切关系，将自己描述为一线提供者，但却感到临终关怀团队成员对他们缺乏认可。观察性实地记录结合这些主题进行了重新审视，以确认定性数据和观察数据的一致性。更好地理解他们的角色可以促进助理融入以患者和家庭为中心的团队互动，从而改善患者和家庭的结局，并留住和支持临终关怀劳动力这一关键组成部分。
