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错失的机会:临终关怀与家庭

Missed Opportunity: Hospice Care and the Family.

作者信息

Tabler Jennifer, Utz Rebecca L, Ellington Lee, Reblin Maija, Caserta Michael, Clayton Margaret, Lund Dale

机构信息

a Department of Sociology , University of Utah , Salt Lake City , Utah , USA.

b College of Nursing , University of Utah , Salt Lake City , Utah , USA.

出版信息

J Soc Work End Life Palliat Care. 2015;11(3-4):224-43. doi: 10.1080/15524256.2015.1108896.

Abstract

A typical mission statement of hospice services is to provide quality, compassionate care to those with terminal illness and to support families through caregiving and bereavement. This study explored the ways that bereavement needs of caregivers, either predeath or postdeath of their spouse/partner, were addressed using qualitative retrospective phone interviews with 19 caregivers whose spouse/partner was enrolled in hospice care for cancer. Overall, participants expressed high satisfaction with hospice care, most often noting a high satisfaction with the quality of care provided to their spouse/partner. During the predeath phase, caregivers recalled being so focused on their spouse/partner's needs that they rarely spoke with hospice staff about their own personal needs and emotions. Participants said that bereavement counseling occurred primarily after the death of the spouse/partner, in the form of generic pamphlets or phone calls from someone they had not met during prior interactions with hospice staff. These findings suggest that caregivers' high satisfaction with hospice may be more associated with the quality of care provided to the spouse/partner than with bereavement support they received. Our findings illustrated a potential missed opportunity for hospices to address the family-oriented goals that are commonly put forward in hospice mission statements.

摘要

临终关怀服务的一个典型使命宣言是为绝症患者提供优质、富有同情心的护理,并通过照料和丧亲之痛支持家庭。本研究通过对19名配偶/伴侣接受癌症临终关怀护理的照料者进行定性回顾性电话访谈,探讨了照料者在配偶/伴侣生前或死后的丧亲需求得到满足的方式。总体而言,参与者对临终关怀护理表示高度满意,最常提到的是对为其配偶/伴侣提供的护理质量高度满意。在生前阶段,照料者回忆说,他们如此专注于配偶/伴侣的需求,以至于很少与临终关怀工作人员谈论自己的个人需求和情感。参与者表示,丧亲辅导主要在配偶/伴侣去世后进行,形式是一般性的宣传册或由他们在之前与临终关怀工作人员互动中未曾见过的人打来的电话。这些发现表明,照料者对临终关怀的高度满意可能更多地与为配偶/伴侣提供的护理质量有关,而非与他们获得的丧亲支持有关。我们的研究结果表明,临终关怀机构在实现临终关怀使命宣言中通常提出的以家庭为导向的目标方面可能错失了一个潜在机会。

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