Exploring the Formal/Informal Caregiver Interface across 3 Death Trajectories

描述（由申请人提供）：该提案涉及美国国立卫生研究院的倡议，以推进创新的结构和过程，以支持垂死的人和他们的照顾者，通过分析在与正式照顾者的短暂互动中识别和应对痛苦的家庭照顾者的挑战。具体而言，我们将：目标1：阐述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中的护理人员不确定性：预期死亡轨迹（肌萎缩侧索硬化症[ALS]），一种意外死亡轨迹，（心力衰竭）和混合死亡轨迹（肺癌）;目标2：将家庭照顾者在12个月的临终关怀过程中的不确定性经历与医疗保健提供者的认识进行比较和对比，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，以支持陷入困境的家庭照顾者度过生命终结的轨迹。人种学方法将被用来检查在正式/非正式的护理人员的互动，包括护理设置固有的价值观和信念之间的复杂的相互作用的护理文化表现;内隐实践理论，影响临床医生的评估和解释的不确定性;和支持性的战略提供给非正式的照顾者在不同的死亡轨迹。这项研究将有目的地扩展到一个纵向研究的临终非正式家庭团聚。我们将比较和对比的非正式照顾者的经验和表达的不确定性与正式的护理提供者的解释照顾者的状态在持续的诊所访问超过一年的过程中。这项前瞻性人种学研究的结果将被翻译成一个理论指导的，以研究为基础的评估和干预协议，以支持痛苦的家庭照顾者在短暂的，但反复与专业护理提供者的互动。然后，我们将准备进行一项支持性护理临床试验，测试所设计方案的疗效和有效性，朝着改善临终护理人员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.