Understanding and Improving Surgical Decision-Making for Persons Living with Dementia, their Family Caregivers, and their Providers: A Mixed Methods Study

了解和改善痴呆症患者、其家庭护理人员及其提供者的手术决策：一项混合方法研究

• 批准号: 10589248
• 负责人: Joel S. Weissman
• 金额: $ 10.12万
• 依托单位: BRIGHAM AND WOMEN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-05-15 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10589248
• 关键词: Caregivers; Caring; Clinical; Communication; Data; Decision Making; Dementia; Environment; Epidemiology; Ethnic Origin; Family; Family Caregiver; Family member; Future; Goals; Hispanic; Hispanic Populations; Hospitals; Intervention; Language; Life; Literature; Methods; Not Hispanic or Latino; Operative Surgical Procedures; Outcome; Pathway interactions; Patient Preferences; Patients; Perception; Persons; Physicians; Policies; Process; Protocols documentation; Provider; Quality of life; Race; Research; Risk; Symptoms; black/white disparity; care providers; design; evidence based guidelines; experience; implicit bias; improved; racial bias; reduce symptoms; surgical risk

Project Summary/Abstract Surgery often has benefits, such as reducing symptoms or extending life, but it is not without risk. Patients vary both in their tolerance of symptoms and of surgical risk. The concept of shared, patient preference-concordant surgical decision making potentially helps patients achieve their goals. Surgical decision-making for persons living with dementia (PLWD) is challenging. Although the influence of race and ethnicity has been examined in such contexts as patient-physician communication and implicit bias, much of this literature focuses on Black-White disparities, rather than Hispanic-Non-Hispanic. To gain a better understanding of the factors and relationships influencing surgical decision-making for Hispanic PLWDs, and, in turn, develop effective protocols to mitigate negative outcomes, it is important that we understand the perspectives of all the stakeholders involved, including patients, family members, and care providers. This supplement seeks to fill a significant gap in the literature by exploring approaches to surgical decision-making for Hispanic patients with dementia from these perspectives. The proposed mixed methods study is designed to understand the epidemiology of surgery for PLWD, as well as patient, caregiver, and provider practices and challenges of surgical decision-making in clinical settings. Research Aim 1: We will explore in-depth how surgical care providers, Hispanic patients with dementia, and patient family members approach the surgical decision-making process. Specifically, we seek to understand the facilitators and barriers for making patient goal-concordant care decisions by examining the perceived relevance of 1) potential racial bias, 2) patient and family values and culture, and 3) communication and language. Research Aim 2: We will explore the perceived hospital experiences of persons living with dementia and their family caregivers after the patients have been discharged. Specifically, we will examine discharge pathways, perceived communication quality, and perceptions of hospital environments to uncover future avenues for research, intervention, and hospital policy improvement.

项目摘要/摘要 手术通常有好处，比如减轻症状或延长生命，但也不是没有风险。 患者对症状和手术风险的耐受性各不相同。共享、耐心的概念 符合偏好的手术决策潜在地帮助患者实现他们的目标。 痴呆症(PLWD)患者的手术决策是具有挑战性的。尽管 种族和民族的影响已经在诸如病人-医生这样的背景下进行了检验 沟通和含蓄的偏见，这些文献的大部分都集中在黑人和白人的差异上，而不是 而不是西班牙裔非西班牙裔。为了更好地了解这些因素和关系 影响拉美裔PLWD的手术决策，进而制定有效的方案来 减少负面结果，重要的是我们理解所有 涉及的利益相关者，包括患者、家庭成员和护理提供者。 这一补充试图通过探索外科手术的方法来填补文献中的一个重大空白。 从这些角度对西班牙裔痴呆症患者的决策。建议的混合方案 方法研究旨在了解PLWD手术的流行病学，以及患者， 临床环境下手术决策的护理者和提供者的实践和挑战。 研究目标1：我们将深入探讨外科护理提供者、拉美裔患者如何 痴呆症，以及患者家属接近手术决策过程。具体来说， 我们试图了解做出与患者目标一致的护理决策的促进者和障碍。 通过检查1)潜在的种族偏见、2)患者和家庭价值观以及 文化，以及3)交流和语言。 研究目标2：我们将探索与患者一起生活的感知医院体验。 痴呆症患者出院后与其家庭照顾者的关系。具体来说，我们将 检查出院途径、感知的沟通质量和对医院的感知 发现未来研究、干预和医院政策改进的途径的环境。