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

• 批准号: 9319329
• 负责人: Lee A Ellington
• 金额: $ 55.59万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-07-20 至 2020-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9319329
• 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; 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; Phonation; 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; 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

 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）：在家庭临终关怀中，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护理的身体需求。晚期癌症临终关怀患者的病情往往比其他临终关怀患者的病情衰退得更快，而且随着死亡的临近，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 经常表示对其角色没有做好准备，并表示需要更多信息和支持。当 FCG 需求得不到解决时，癌症患者的护理可能会受到影响，FCG 的生活质量和情绪健康也会受到负面影响。临终关怀团队 (HCT) 旨在为作为团队成员的家庭提供信息和支持，并提供高质量的护理和有效的沟通，以满足特定的患者和家庭需求。然而，我们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，而 HCT 往往没有认识到 FCG 的关键作用，未能充分解决他们的担忧。迄今为止的研究在很大程度上忽视了护理期间患者和家庭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 FCG 丧亲调整的长期影响的研究很少。我们建议通过评估 HCT 在及时满足临终关怀 FCG 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。我们将利用姑息治疗研究合作社的资源和我们团队以往的研究经验，进行多地点、多方法的前瞻性纵向研究，系统监测FCG需求的日常波动。使用自动电信系统，120 个 FCG 将评估患者和 FCG 症状负担，以及 FCG 焦虑、抑郁、积极情绪和精神健康。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，我们将分析家访和电话期间 FCG-HCT 通信的持续一致性。将评估 FCG-HCT 一致性的平均水平和变化率，以预测患者死亡后 2 个月和 6 个月的 FCG 死亡结果，包括心理调整、负担、健康状况和护理满意度。最后，我们建议通过音频日记捕捉 FCG 的临终关怀日常经历，以确定他们的看法如何/是否映射到 HCT 的客观测量和人际沟通模式。该项目不是通过一次性的更传统的视角来检查临终关怀过程，而是第一个通过捕获 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，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 结果相关的特定的以家庭为中心的 HCT 流程，为未来的临床干预提供信息。