Structural Racism and Engagement of Family Caregivers in Serious Illness Care

项目总结 严重疾病是一种死亡风险很高的疾病，或者对一个人的日常生活产生负面影响 功能或过度紧张的照顾者。据估计，美国有1200万成年人患有严重疾病。 结构性种族主义和种族/民族居住隔离可能通过以下方式影响严重疾病的结局：1.限制 获得姑息治疗，该专业侧重于改善严重疾病患者的生活质量，并 2.限制家庭照顾者参与医疗保健系统的能力。护理者 对这一群体至关重要，因为他们帮助制定复杂的决策、护理协调和患者 倡导。结构性种族主义指的是社会通过以下方式助长种族歧视的所有方式 相辅相成的体系(如住房、教育、就业和医疗)，最终影响 健康结果。这类机构包括医疗保健系统，其内部文化可能会影响护理服务的提供 以及不同种族和民族的患者结果不同。很少有研究试图强调种族主义的影响 关于照顾者。为了解决这一差距，我们提出了一项基于总体的、多层次的、混合方法的研究 马萨诸塞州是一个多元化的州，拥有大量有限的资源社区和人口 这包括大约30%的有色人种(POC)。专注于单个州允许深入调查 种族组成和资源不同的社区，以及不同条件下不同的医院系统 规模、盈利状况和学术背景。在目标1中，我们提出了一种定量分析，它将描述 社区层面的严重疾病负担、获得以医院为基础的姑息治疗的机会、护理人员的可用性 资源及其对个人一级健康结果的影响。所有付款人索赔数据库中的数据将 描述社区级别的重疾率和获得姑息治疗的机会(旅行时间)，以及个人- 卫生保健利用水平(住院、姑息治疗使用、住院时间、ICU住院时间)和健康结果 (住院死亡)。来自以下地点的邻里级照顾者相关资源的关联数据的中介分析 美国社区调查将确定邻里层面的照顾者资源对 结果。我们假设，以更长的旅行时间来衡量，获得医疗服务的机会越少，将会有更多 护理人员资源较少的社区会对PoC产生负面影响。在目标2中，我们进行了定性案例 对医院的研究，以表征医院文化如何支持或限制照顾者对个人的参与 患有来自不同POC社区的严重疾病。我们将进行n=8个深入的案例研究，以确定 照顾者参与的制度文化。在目标3中，我们召集社区、内容和政策专家 综合定量和定性结果，以产生文化上合适的医院建议和 可操作的政策解决方案，以提高严重疾病照顾者参与的公平性。解开纠缠的 严重疾病中隔离、邻里剥夺和医疗保健利用之间的关系将 帮助我们表明，种族主义，而不是不信任，是公平护理和健康结果的主要障碍。

PROJECT SUMMARY Serious illness is a condition that carries a high risk of mortality and either negatively impacts a person’s daily function or excessively strains their caregivers. Serious illness affects an estimated 12 million US adults. Structural racism and racial/ethnic residential segregation may affect serious illness outcomes by 1. limiting access to palliative care, the specialty focused on improving quality of life for persons with serious illness and their families and 2. limiting the capacity of family caregivers to engage with the healthcare system. Caregivers are critical for this population because they assist with complex decision making, care coordination and patient advocacy. Structural racism refers to the totality of ways in which societies foster racial discrimination through mutually reinforcing systems (such as housing, education, employment, and healthcare) that ultimately affect health outcomes. Such institutions include healthcare systems, whose internal cultures may affect care delivery and patient outcomes differentially by race and ethnicity. Few studies have attempted to highlight racism’s impact on caregivers. To address this gap, we propose a population-based, multi-level, mixed-methods study within and across the state of Massachusetts, a diverse state with large limited-resource communities and a population that includes ~30% persons of color (POC). Focusing on a single state allows for in-depth investigation across communities that vary in racial composition and resources, as well as across hospital systems that vary in terms of size, profit status and academic affiliation. In Aim 1 we propose a quantitative analysis that will describe neighborhood-level burden of serious illness, access to hospital-based palliative care, availability of caregiver resources, and their impact on individual-level health outcomes. Data from the All Payer Claims Database will characterize neighborhood-level rates of serious illness and access to palliative care (travel time), and individual- level health care utilization (hospitalization, palliative care use, length of stay, ICU stay) and health outcomes (in-hospital death). Mediation analysis with linked data on neighborhood-level caregiver-related resources from the American Community Survey will identify the effect of neighborhood-level caregiver resources on outcomes. We hypothesize that poorer access to care, measured as longer travel time to hospitals, will more negatively affect POC from neighborhoods with fewer caregiver resources. In Aim 2 we conduct qualitative case studies of hospitals to characterize how hospital cultures support or constrain caregiver engagement for persons with serious illness from different POC communities. We will conduct n=8 in-depth case studies to characterize institutional cultures of caregiver engagement. In Aim 3 we convene community, content, and policy experts to synthesize quantitative and qualitative results to produce culturally appropriate hospital recommendations and actionable policy solutions to improve equity in caregiver engagement for serious illness. Disentangling the relationships between segregation, neighborhood deprivation, and healthcare utilization in serious illness will help us show that racism, not mistrust, is a primary barrier to equitable care and health outcomes.