临终关怀家庭护理人员在前瞻性音频日记中的不确定性、负担和未满足的需求。

IF 1.2 4区 医学 Q3 NURSING
Megan C Thomas Hebdon, Kristin G Cloyes, Marilisa Vega, Susan J Rosenkranz, Maija Reblin, Djin Tay, Kathi Mooney, Lee Ellington
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引用次数: 0

摘要

通过回顾性、标准化的自我报告调查,文献中充分记录了癌症临终关怀护理人员(HCC)的负担和未满足的需求。癌症临终关怀护理人员对负担和未满足需求的日常体验很少在实时环境中捕捉到。该二次数据分析的目的是用临终关怀登记和患者死亡之间的前瞻性HCC(N=50)音频日记数据来描述HCC的日常负担和未满足的需求。不确定性理论为分析提供了一个框架。日记被转录、演绎和归纳分析,并按主题组织。日常经历的不确定性是HCC负担和未满足需求的重要驱动因素。未满足的需求包括对临终关怀团队支持的不明确/未满足的期望;不了解HCC的作用和参与程度;以及与临终关怀团队成员的沟通挑战。HCC负担的来源是他们“应该”的感受和实际感受之间的不和谐;感到孤独/没有出口来表达感情;对自身健康和后续患者影响的担忧;感到无助/占据了一个临界空间。围绕HCC经历的不确定性包括与临终关怀团队的互动,以及临终关怀的性质、症状管理、死亡过程和HCC的作用。临终关怀团队可以通过评估、理解和识别HCC的日常环境来应对不确定性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Hospice Family Caregivers' Uncertainty, Burden, and Unmet Needs in Prospective Audio Diaries.

Hospice cancer caregivers' (HCCs') burden and unmet needs are well documented in the literature through retrospective, standardized self-report surveys. Hospice cancer caregiver daily experiences of burden and unmet needs are rarely captured within a real-time context. The purpose of this secondary data analysis was to characterize HCCs' day-to-day burden and unmet needs with prospective HCC (N = 50) audio diary data between hospice enrollment and patient death. Uncertainty theory provided a framework for analysis. Diaries were transcribed, analyzed deductively and inductively, and organized thematically. Uncertainty in day-to-day experiences was an important driver of HCC burden and unmet needs. Unmet needs included unclear/unmet expectations regarding hospice care team support; not understanding the extent of HCC role and involvement; and communication challenges with hospice team members. Sources of HCCs' burden were dissonance between how they "should" feel and how they actually felt; feeling alone/having no outlet to express feelings; concerns about their own health and subsequent patient impact; and feeling helpless/occupying a liminal space. Uncertainty surrounding HCCs' experiences encompassed interactions with hospice care teams and the nature of end-of-life caregiving with symptom management, the dying process, and the HCC role. Hospice care teams can respond to uncertainty through assessment, understanding, and recognition of the daily context of HCCs.

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来源期刊
CiteScore
2.60
自引率
11.10%
发文量
203
审稿时长
6-12 weeks
期刊介绍: Journal of Hospice & Palliative Nursing (JHPN) is the official journal of the Hospice & Palliative Nurses Association and is the professional, peer-reviewed journal for nurses in hospice and palliative care settings. Focusing on the clinical, educational and research aspects of care, JHPN offers current and reliable information on end of life nursing. Feature articles in areas such as symptom management, ethics, and futility of care address holistic care across the continuum. Book and article reviews, clinical updates and case studies create a journal that meets the didactic and practical needs of the nurse caring for patients with serious illnesses in advanced stages.
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