Exploring the Formal/Informal Caregiver Interface across 3 Death Trajectories

描述(由申请人提供)：这项提案针对NIH的倡议，通过描述在与正式照顾者的短暂互动中识别和回应痛苦的家庭照顾者所面临的挑战，推进创新的结构和程序来支持垂死的人及其照顾者。具体地说，我们将：目标1：阐明卫生保健提供者如何识别、解释和应对三种不同的临终轨迹中的照顾者不确定性：预期死亡轨迹(肌萎缩侧索硬化症[ALS])、意外死亡轨迹(心力衰竭)和混合死亡轨迹(肺癌)；目标2：比较和对比家庭照顾者在12个月的临终关怀过程中的不确定性经历与卫生保健提供者在互动期间对照顾者痛苦的认识、解释和反应；目标3：将目标1和目标2的结果转化为理论指导的、基于研究的评估和干预方案，以在临终轨迹上支持陷入困境的家庭照顾者。将使用人种学方法来检查正式/非正式照顾者互动期间的护理文化表现，包括护理环境固有的价值观和信念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隐性实践理论；以及跨不同死亡轨迹向非正式照顾者提供的支持策略。这项研究将有目的地扩展到对临终非正式家庭照料的纵向研究。我们将比较和对比非正式照顾者的经历和不确定的表达，以及正式照顾者在一年多的持续诊所访问期间对照顾者状况的解释。这项关于护理接口的前瞻性人种学研究的结果将被转化为一种理论指导的、基于研究的评估和干预方案，用于在与专业护理提供者短暂但重复的互动期间支持陷入困境的家庭护理人员。然后，我们将准备进行支持性护理临床试验，测试设计的方案的有效性和有效性，朝着提高临终照顾者的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.