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Cancer Caregiver interactions with the Hospice team: implications for end of life and bereavement outcomes

癌症护理人员与临终关怀团队的互动：对生命终结和丧亲结果的影响

基本信息

批准号：
9734178
负责人：
Lee A Ellington
金额：
$ 54.61万
依托单位：
UNIVERSITY OF UTAH
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-07-20 至 2022-04-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9734178
关键词：
Address Admission activity Advanced Malignant Neoplasm Affect Anxiety Bereavement Cancer Patient Caregiver Burden Caregivers Caring Cessation of life Clinical Communication Complex Distress Effectiveness Emotional Estrogen receptor positive Face Family Family Caregiver Fatigue Feeling Funding Future Goals Health Health Care Costs Health Communication Health Personnel Health Status Home environment Home visitation Hospice Care Hospitalization Hospitals Intervention Link Longitudinal prospective study Malignant Neoplasms Maps Measures Medical Care Team Mental Depression Methods Monitor Nurses Outcome Palliative Care Patient Care Patient-Focused Outcomes Patients Pattern Perception Personal Communication Personal Satisfaction Play Process Psychological adjustment Quality of Care Quality of life Reporting Research Resources Role Site Specific qualifier value Symptoms System Team Process Telephone Time Visit Voice Well in self Work base caregiver bereavement caregiving design diaries end of life experience family support hospice environment improved lens meetings member neglect novel strategies public health relevance rate of change response satisfaction symptom management

项目摘要

DESCRIPTION (provided by applicant): In home-based hospice, family caregivers (FCGs) provide 24/7 care, including patient symptom management and emotional support, while simultaneously managing their own distress and the physical demands of caregiving. Advanced cancer hospice patients often face a much more rapid decline than other hospice patients, and as death approaches, both care demands and caregiver stress increase. FCGs of cancer hospice patients frequently report feeling unprepared for their role and express the need for more information and support. When FCG needs go unaddressed, cancer patient care may be compromised and FCG quality of life and emotional well-being are negatively impacted. The hospice care team (HCT) is designed to inform and support families as integral team members, and to provide high quality care and effective communication aligned to meet specific patient and family needs. However, our work and that of others indicate FCGs of hospice cancer patients are reluctant to voice concerns, and HCTs often do not recognize the critical role of FCGs, failing to fully address their concerns. The dynamic change in patient and family needs during care and the response of the entire interdisciplinary team has been largely neglected in research to date. Further, there is little work on the long term impact of hospice care and FCGs' bereavement adjustment. We propose to address these gaps by evaluating HCTs' responsiveness in terms of timely alignment to hospice FCGs' daily needs and assessing the impact of these interactions on FCG outcomes. Leveraging the resources of the Palliative Care Research Cooperative and our team's previous research experience, we will conduct a multi- site, multi-method prospective longitudinal study in which we systematically monitor the daily fluctuation of FCGs needs. Using an automated telecommunication system, 120 FCGs will rate patient and FCG symptom burden, and FCG anxiety, depression, positive affect, and spiritual wellbeing. We will then use a novel approach to assess HCT responsiveness to these needs, we will analyze ongoing alignment of FCG-HCT communication during home visits and phone calls. Mean level and rate of change of FCG-HCT alignment will be assessed to predict FCG post-patient death outcomes at 2 and 6 months post death, including psychological adjustment, burden, health status, and satisfaction with care. Finally, we propose to capture FCGs' daily experiences with hospice care through audio diaries to determine how/whether their perceptions map onto objective measures and interpersonal communication patterns with the HCT. Instead of examining the hospice care process through a more traditional lens in a one time-encounter, this project will be the first to assess the complex clinical reality of hospice care by capturing FCG daily needs and the response of each member of the team over the course of care to assess impact on FCG outcomes. The long term goal of this project is to inform future clinical interventions by identifying specific family-centered HCT processes that are linked to improved FCG outcomes.

描述(由申请人提供)：在以家庭为基础的临终关怀中，家庭照顾者(FCGS)提供全天候护理，包括患者症状管理和情感支持，同时管理自己的痛苦和护理的身体需求。晚期癌症临终关怀患者通常比其他临终关怀患者面临更快的下降，随着死亡的临近，护理需求和照顾者的压力都增加了。癌症临终关怀患者的FCGS经常报告说，他们对自己的角色感到准备不足，并表示需要更多的信息和支持。当FCG的需求得不到解决时，癌症患者的护理可能会受到影响，FCG的生活质量和情感健康会受到负面影响。临终关怀团队(HCT)旨在将家庭作为不可或缺的团队成员提供信息和支持，并提供高质量的护理和有效的沟通，以满足特定患者和家庭的需求。然而，我们的工作和其他人的工作表明，临终关怀癌症患者的FCGS不愿表达关切，而HCT往往没有认识到FCGS的关键作用，未能充分解决他们的关切。到目前为止，在研究中很大程度上忽略了护理过程中患者和家属需求的动态变化以及整个跨学科团队的反应。此外，关于临终关怀和FCGS的丧亲调整的长期影响的工作很少。我们建议通过评估HCT在及时调整临终关怀FCGS的日常需求方面的响应性并评估这些交互作用对FCG结果的影响来解决这些差距。利用姑息治疗研究合作社的资源和我们团队之前的研究经验，我们将进行一项多地点、多方法的前瞻性纵向研究，系统地监测FCGS需求的每日波动。使用自动通信系统，120 FCGS将对患者和FCG症状负担以及FCG焦虑、抑郁、积极情绪和精神健康进行评级。然后，我们将使用一种新的方法来评估HCT对这些需求的响应，我们将分析家访和电话期间FCG-HCT通信的持续一致性。将评估FCG-HCT对齐的平均水平和变化率，以预测患者死后2个月和6个月的FCG死亡结果，包括心理适应、负担、健康状况和对护理的满意度。最后，我们建议通过音频日记记录FCGS在临终关怀方面的日常经验，以确定他们的感知如何/是否映射到客观衡量标准和与HCT的人际沟通模式。该项目将通过捕获FCG日常需求和团队中每个成员在护理过程中的反应来评估临终关怀的复杂临床现实，以评估对FCG结果的影响，而不是通过一次性通过更传统的镜头来检查临终关怀过程。该项目的长期目标是通过确定与改善FCG结果相关的特定的以家庭为中心的HCT过程，为未来的临床干预提供信息。