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

基本信息

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
项目类别：
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

项目摘要

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.

项目概要严重疾病是一种具有很高死亡风险的疾病，并且会对一个人的日常生活产生负面影响据估计，有 1200 万美国成年人患有严重疾病。结构性种族主义和种族/族裔居住隔离可能会通过以下方式影响严重疾病的结果： 1. 限制获得姑息治疗的机会，该专业专注于改善重病患者的生活质量和 2. 限制家庭护理人员参与医疗保健系统的能力。对于这一人群至关重要，因为他们协助复杂的决策、护理协调和患者结构性种族主义是指社会通过各种方式助长种族歧视的方式的总和。相辅相成的系统（例如住房、教育、就业和医疗保健）最终会影响此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。很少有研究试图强调种族主义的影响。为了解决这一差距，我们提出了一项基于人群的、多层次的、混合方法的研究。整个马萨诸塞州是一个多元化的州，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)。专注于单一州可以进行跨州的深入调查。种族构成和资源不同的社区，以及术语不同的医院系统在目标 1 中，我们提出了一项定量分析来描述。社区层面的严重疾病负担、获得医院姑息治疗的机会、护理人员的可用性所有付款人索赔数据库中的数据及其对个人健康结果的影响。描述社区一级的严重疾病发生率和获得姑息治疗的机会（旅行时间），以及个人- 医疗保健利用率水平（住院、姑息治疗的使用、住院时间、ICU 住院时间）和健康结果（院内死亡）使用来自社区级护理人员相关资源的关联数据进行中介分析。美国社区调查将确定社区级护理人员资源对我们追求的结果是，获得医疗服务的机会越少（以前往医院的时间越长来衡量）就越容易获得医疗服务。对照顾者资源较少的社区的 POC 产生负面影响在目标 2 中，我们进行了定性案例。对医院进行研究，以描述医院文化如何支持或限制护理人员的参与我们将进行 n=8 的深入案例研究来描述来自不同 POC 社区的严重疾病。在目标 3 中，我们召集社区、内容和政策专家来讨论护理人员参与的制度文化。综合和定量定性结果，以产生适合文化的医院建议和提高护理人员参与严重疾病的公平性的可行政策解决方案。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，是公平护理和健康结果的主要障碍。