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（由适用提供）：在家庭临终关怀中，家庭护理人员（FCG）提供24/7的护理，包括患者症状管理和情感支持，同时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会比其他临终关怀患者迅速下降，并且随着死亡的临近，护理需求和护理人员的压力增加。癌症临终关怀患者的FCG经常报告对自己的作用没有准备，并表示需要更多信息和支持。当FCG需求未解决时，癌症患者护理可能会受到损害，FCG的生活质量和情感健康受到负面影响。临终关怀团队（HCT）旨在为家庭成员提供信息和支持家庭，并提供高质量的护理和有效的沟通，以满足特定的患者和家庭需求。但是，我们的工作和其他工作表明，临终关怀患者的FCG不愿意担心，HCT通常不认识FCG的关键作用，无法完全解决他们的关注。迄今为止，在研究中，患者和家庭需求的动态变化以及整个跨学科团队的反应已被忽略了。此外，对于临终关怀和FCG的丧亲调整的长期影响，几乎没有工作。我们建议通过评估HCT与临终关怀FCG的日常需求的及时对齐方式来解决这些差距，并评估这些相互作用对FCG结果的影响。利用姑息治疗研究合作社和我们团队以前的研究经验的资源，我们将进行多站点，多方法的前瞻性纵向研究，我们系统地监测FCGS需求的每日波动。使用自动电信系统，120个FCG将评估患者和FCG符号伯恩，以及FCG动画，抑郁，积极的影响和精神健康。然后，我们将使用一种新颖的方法来评估HCT对这些需求的响应能力，我们将分析家庭访问和电话期间FCG-HCT通信的持续对齐。将评估FCG-HCT一致性的平均水平和变化率，以预测死亡后2和6个月的患者后死亡结局，包括心理调整，伯恩，健康状况以及对护理的满意度。最后，我们建议通过音频日记来捕捉FCG的日常临终关怀护理体验，以确定他们的看法是如何/是否映射到客观测量和与HCT的人际关系沟通模式上的映射。该项目没有在一次性的情况下通过更传统的镜头来检查临终关怀的护理过程，而是第一个通过捕获FCG日常需求以及在护理过程中评估团队每个成员的反应来评估对FCG成果的影响，以评估临终关怀护理的复杂临床现实。该项目的长期目标是通过确定与改善FCG结果有关的特定以家庭为中心的HCT过程来告知未来的临床干预措施。