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

 描述（由申请人提供）：在以家庭为基础的临终关怀中，家庭护理人员（FCG）提供24/7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身体需求。晚期癌症临终关怀患者往往面临着比其他临终关怀患者更快的下降，随着死亡的临近，护理需求和护理人员的压力都会增加。癌症临终关怀患者的FCG经常报告他们的角色感到措手不及，并表示需要更多的信息和支持。当FCG需求得不到满足时，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也会受到负面影响。临终关怀团队（HCT）旨在告知和支持家庭作为不可分割的团队成员，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。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FCG不愿意表达担忧，HCT通常不认识到FCG的关键作用，未能充分解决他们的担忧。在护理过程中，患者和家庭需求的动态变化以及整个跨学科团队的反应在很大程度上被忽视了。此外，很少有工作的长期影响临终关怀和FCG的丧亲调整。我们建议通过评估HCT在及时调整临终关怀FCG的日常需求方面的响应能力，并评估这些相互作用对FCG结果的影响，来解决这些差距。利用姑息治疗研究合作组织的资源和我们团队以往的研究经验，我们将进行一项多中心、多方法的前瞻性纵向研究，系统地监测FCG需求的每日波动。使用自动电信系统，120名FCG将对患者和FCG症状负担以及FCG焦虑、抑郁、积极情感和精神健康进行评估。然后，我们将使用一种新的方法来评估HCT对这些需求的反应，我们将分析在家访和电话中FCG-HCT沟通的持续一致性。将评估FCG-HCT对齐的平均水平和变化率，以预测死亡后2个月和6个月的FCG患者死亡后结局，包括心理调整、负担、健康状况和护理满意度。最后，我们建议捕捉FCGs的日常经验与临终关怀，通过音频日记，以确定他们的看法如何/是否映射到客观的措施和人际沟通模式与HCT。该项目将首次通过捕捉FCG日常需求和团队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，而不是通过一次接触中更传统的透镜来检查临终关怀过程，以评估对FCG结果的影响。该项目的长期目标是通过确定与改善FCG结局相关的特定以家庭为中心的HCT过程，为未来的临床干预提供信息。

 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.