Exploring the Formal/Informal Caregiver Interface across 3 Death Trajectories

描述（由申请人提供）：该提案解决了NIH的倡议，通过在与正式护理人员的简短互动中识别和响应痛苦的家庭护理人员的挑战，来推进创新结构和流程，以支持垂死的人及其护理人员。具体而言，我们将：目标1：阐明医疗保健提供者如何识别、解释和应对三种不同的临终轨迹：预期死亡轨迹（肌萎缩性侧索硬化症[ALS]）、意外死亡轨迹（心力衰竭）和混合死亡轨迹（肺癌）；目的2：比较和对比家庭照顾者在12个月的临终关怀过程中不确定的经历与卫生保健提供者在他们的互动中对照顾者痛苦的认识、解释和反应；目标3：将目标1和2的发现转化为理论指导的、基于研究的评估和干预协议，以支持痛苦的家庭照顾者在生命末期的轨迹。民族志方法将用于检查在正式/非正式护理人员互动中表现出来的护理文化，包括护理环境固有的价值观和信仰之间的复杂相互作用；影响临床医生对不确定性的评估和解释的内隐实践理论以及为不同死亡轨迹的非正式护理人员提供的支持性策略。该研究将有目的地扩展为对临终非正式家庭照顾的纵向研究。我们将比较和对比非正式护理人员的经验和不确定的表达与正式护理提供者的解释，在持续一年的诊所访问期间的护理人员的状态。这项关于护理界面的前瞻性人种学研究的结果将被转化为理论指导的、基于研究的评估和干预协议，以支持痛苦的家庭照顾者在与专业护理提供者的短暂但反复的互动中。然后，我们将准备进行一项支持性护理临床试验，测试所设计方案的功效和有效性，朝着改善临终护理者生活质量的长期目标迈进。

DESCRIPTION (provided by applicant): This proposal addresses the NIH's initiative to advance innovative structures and processes to support dying persons and their caregivers by profiling the challenges of recognizing and responding to distressed family caregivers during brief interactions with formal caregivers. Specifically, we will: Aim 1: Explicate how health care providers recognize, interpret, and respond to caregiver uncertainty across three distinct end-of-life trajectories: an expected-death trajectory (amyotrophic lateral sclerosis [ALS]), an unexpected-death trajectory (heart failure), and a mixed-death trajectory (lung cancer); Aim 2: Compare and contrast the family caregivers' experiences of uncertainty over the course of 12 months of end-of-life care with the health care providers' recognition, interpretation, and response to caregiver distress during their interactions; and, Aim 3: Translate findings from Aims 1 & 2 into a theory-guided, research-based assessment and intervention protocol to support distressed family caregivers across the end-of-life trajectory. Ethnographic methods will be used to examine the culture of care manifest during formal/informal caregiver interactions, including the complex interplay between the values and beliefs inherent to the care setting; implicit practice theory that influences clinicians' assessment and interpretation of uncertainty; and supportive strategies offered to informal caregivers across different death trajectories. The study will be purposefully extended into a longitudinal study of end-of-life informal family caregiving. We will compare and contrast the informal caregivers' experiences and expressions of uncertainty with the formal care providers' interpretation of the caregivers' status during ongoing clinic visits over the course of one year. The findings of this prospective ethnographic study of the caregiving interface will be translated into a theory-guided, research-based assessment and intervention protocol for supporting distressed family caregivers during brief, yet repeated interactions with professional care providers. We then will be prepared to conduct a supportive care clinical trial testing the efficacy and effectiveness of the devised protocol, moving toward our long-term goal of improving the quality of life of end-of-life caregivers.