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WE’RE THE EYES AND THE EARS BUT WE DON’T HAVE A VOICE: PERSPECTIVES OF HOSPICE AIDES

机译:我们是眼与耳但我们没有声音:临终关怀的视角

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摘要

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 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.
机译:临终关怀助手是家庭临终关怀服务不可或缺的一部分,在临终关怀跨学科团队的有效沟通与合作中发挥着至关重要的作用。尽管他们发挥了至关重要的作用,但对于临终关怀助手对其提供临终关怀服务的作用的看法知之甚少。这项定性研究探讨了临终关怀人员对其工作,与患者,家庭和跨学科团队成员的关系以及对临终关怀的贡献的看法。进行了两个重点小组的临终关怀助手(N = 13),并进行了16小时的家庭护理观察。焦点小组数据经过归纳和迭代编码,并确定了三个主题:1)“我们是眼睛和耳朵”,2)“我们不在循环中”和3)“我们没有声音”。助手们根据他们与患者和家人的密切关系将自己描述为一线服务提供者,但他们却被临终关怀团队的成员认识不到。以主题重新审查了观测领域的笔记,以确认定性和观测数据的一致性。更好地了解他们的角色可以帮助助手将其整合到以患者和家庭为中心的团队互动中,从而改善患者和家庭的结局,并保留并支持临终关怀员工队伍的这一关键组成部分。

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