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: 10474662
• 负责人: Susan Desanto-Madeya
• 金额: $ 78.07万
• 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/10474662
• 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; Ethnic Origin; Ethnography; Evaluation; 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; 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; base; 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 and ethnic; 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， 功能或过度紧张他们的照顾者。严重疾病影响了大约1200万美国成年人。 结构性种族主义和种族/民族居住隔离可能会影响严重疾病的结果1。限制 获得姑息治疗，该专业侧重于改善重病患者的生活质量， 家人和2。限制了家庭照顾者参与医疗保健系统的能力。照顾者 对这一人群至关重要，因为它们有助于复杂的决策、护理协调和患者 宣传。结构性种族主义是指社会通过以下方式助长种族歧视的所有方式： 相互加强的系统（如住房、教育、就业和医疗保健），最终影响 健康成果。这些机构包括医疗保健系统，其内部文化可能会影响护理提供 和患者结局的差异。很少有研究试图强调种族主义的影响 照顾者。为了解决这一差距，我们提出了一个基于人口的，多层次的，混合方法的研究， 整个马萨诸塞州，一个多元化的州，拥有大量资源有限的社区和人口， 其中包括约30%的有色人种（POC）。专注于一个国家，可以深入调查 不同种族组成和资源的社区，以及不同术语的医院系统， 规模、利润状况和学术关系。在目标1中，我们提出了一个定量分析， 社区一级的严重疾病负担，获得基于医院的姑息治疗，提供护理人员 资源及其对个人健康结果的影响。所有付款人索赔数据库的数据将 描述社区一级的严重疾病率和获得姑息治疗的机会（旅行时间），以及个人- 医疗保健利用水平（住院、姑息治疗使用、住院时间、ICU住院时间）和健康结局 （住院死亡）。中介分析与链接数据对邻里一级的相关资源， 美国社区调查将确定社区一级护理人员资源对 结果。我们假设，更差的医疗服务，衡量为更长的旅行时间到医院，将更多 负面影响来自护理人员资源较少的社区的POC。在目标2中，我们进行定性案例 医院研究，以确定医院文化如何支持或限制护理人员参与 来自不同POC社区的重病患者。我们将进行n = 8个深入的案例研究， 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，以产生文化上适当的医院建议， 可采取行动的政策解决方案，以改善严重疾病护理人员参与的公平性。解开 严重疾病中的隔离、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。