Structural Racism and Engagement of Family Caregivers in Serious Illness Care

结构性种族主义和家庭护理人员参与重病护理

• 批准号: 10610433
• 负责人: Susan Desanto-Madeya
• 金额: $ 72.62万
• 依托单位: UNIV OF MASSACHUSETTS MED SCH WORCESTER
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-04-15 至 2027-01-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10610433
• 关键词: Action Research; Address; Adult; Affect; American; Caregiver support; Caregivers; Caring; Case Study; Cessation of life; Chronic Obstructive Pulmonary Disease; Communities; Community Surveys; Complex; Data; Databases; Decision Making; Education; Elderly; Employment; End stage renal failure; Equity; Ethnic Origin; Ethnography; Exhibits; Family; Family Caregiver; Fostering; Health; Health Services Accessibility; Health Status; Healthcare; Healthcare Systems; Heart failure; Hospitalization; Hospitals; Housing; Individual; Institution; Institutional Racism; Interview; Investigation; Length of Stay; Link; Malignant Neoplasms; Massachusetts; Measures; Mediating; Mediation; Medical; Medicine; Methods; Neighborhoods; Outcome; Palliative Care; Patient Care; Patient advocacy; Patient-Focused Outcomes; Persons; Policies; Policy Analysis; Population; Prevalence; Quality of life; Race; Recommendation; Resource-limited setting; Resources; Rhode Island; Sampling; School Nursing; Services; Societies; Structural Racism; Structure; System; Time; Travel; United States National Institutes of Health; Universities; Variant; Woman; advanced dementia; arm; care coordination; care delivery; community engagement; daily functioning; deprivation; design; health care service utilization; health disparity; health equity; high risk; improved; informant; medical schools; medical specialties; mortality risk; multidisciplinary; negative affect; people of color; population based; racial discrimination; racism; residential segregation; segregation; social

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.

项目摘要 严重疾病是一种具有高死亡风险的疾病，并且每天对人的每日产生负面影响 功能或极大的照顾者。严重疾病会影响约1200万美国成年人。 结构性种族主义和种族/种族居民种族隔离可能会影响严重疾病的结果。 获得姑息治疗，专门致力于改善严重疾病的人的生活质量 他们的家人和2。限制家庭护理人员与医疗保健系统互动的能力。照顾者 对这个人群至关重要，因为他们有助于进行复杂的决策，护理协调和患者 倡导。结构性种族主义是指社会通过 相互加固的系统（例如住房，教育，就业和医疗保健）最终影响 健康结果。这样的机构包括医疗保健系统，其内部文化可能会影响护理交付 种族和种族的患者结果也有所不同。很少有研究试图强调种族主义的影响 关于看护人。为了解决这一差距，我们提出了一项基于人群的多层次，混合方法研究 在马萨诸塞州，在整个马萨诸塞州，一个多元化的州，拥有大型限量资源社区和人口 其中包括〜30％的有色人种（POC）。专注于单一状态可以进行深入调查 种族组成和资源以及各种医院系统各不相同的社区 规模，利润状况和学术隶属关系。在AIM 1中，我们提出了一个定量分析，将描述 社区水平的严重疾病烧伤，获得基于医院的姑息治疗，护理人员的可用性 资源及其对个人水平健康成果的影响。来自所有付款人索赔的数据数据库将 表征严重疾病和获得姑息治疗（旅行时间）和个人 - 水平医疗保健利用（住院，姑息治疗，住院时间，ICU住宿时间）和健康成果 （院内死亡）。调解分析与邻里级护理人员相关资源的链接数据 美国社区调查将确定邻里级护理人员资源对 结果。我们假设获得更差的护理机会，以较长的旅行时间去医院，将会更多 负面影响护理人员资源较少的社区的POC。在AIM 2中，我们进行定性案件 医院的研究以表征医院文化如何支持或约束护理人员的参与 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表征 照料者参与的机构文化。在AIM 3中，我们召集社区，内容和政策专家 综合定量和定性结果，以产生适当的医院建议和 可行的政策解决方案，以改善护理人员参与严重疾病的股权。解开 种族隔离，邻里剥夺和严重疾病中的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成果的主要障碍。