systemic racism

系统性种族主义
  • 文章类型: Journal Article
    目标:尽管临床医生对系统性种族主义的认识有所提高,医疗保健中缺乏对反种族主义的实质性行动。临床工作人员的观点,特别是那些种族少数民族/有色人种(POC)的人,他们不成比例地占据了团队权力较小的支持人员角色,可以洞察进步的障碍,并可以为未来推进多样性的努力提供信息,股本,和包容性(DEI,也称为EDI)在医疗保健环境中。这项定性研究探讨了社区卫生诊所团队中工作人员对种族和角色权力动态的看法。
    方法:从2021年5月至7月,我们对在大型城市医疗保健系统的社区卫生诊所工作的工作人员进行了45分钟的半结构化访谈。我们实施了有目的的招聘,以对POC和支持人员进行过度抽样,并实现了系统中13个社区卫生诊所的平等代表。采访是录音,转录,并使用批判意识形态范式分析了超过6个月的时间。确定了反映与种族和角色权力动态有关的经验的主题。
    结果:我们的队列有60名参与者:42名(70%)是支持人员(医疗助理,前台文员,护理导航员,护士)和18名(30%)是临床医生和诊所负责人。绝大多数参与者的年龄为26至40岁(60%),是女性(83%),和POC(68%)。出现了五个主题:(1)POC面临隐藏的挑战,(2)种族歧视仍然存在,(3)动力动力学使不作为长期存在,(4)人际行为促进安全和公平,(5)文化转变需要制度层面的变革。
    结论:了解护理团队内的种族和角色动力动态,包括权力较少工作人员的经验,对推进DEI在医疗保健领域至关重要。
    OBJECTIVE: Despite increased clinician awareness of systemic racism, lack of substantial action toward antiracism exists within health care. Clinical staff perspectives, particularly those of racial-ethnic minorities/persons of color (POC) who disproportionately occupy support staff roles with less power on the team, can yield insights into barriers to progress and can inform future efforts to advance diversity, equity, and inclusion (DEI, also referred to as EDI) within health care settings. This qualitative study explored the perspectives of staff members on race and role power dynamics within community health clinic teams.
    METHODS: We conducted semistructured 45-minute interviews with staff members working in community health clinics in a large urban health care system from May to July 2021. We implemented purposeful recruitment to oversample POC and support staff and to achieve equal representation from the 13 community health clinics in the system. Interviews were audio recorded, transcribed, and analyzed over 6 months using a critical-ideological paradigm. Themes reflecting experiences related to race and role power dynamics were identified.
    RESULTS: Our cohort had 60 participants: 42 (70%) were support staff (medical assistants, front desk clerks, care navigators, nurses) and 18 (30%) were clinicians and clinic leaders. The large majority of participants were aged 26 to 40 years (60%), were female (83%), and were POC (68%). Five themes emerged: (1) POC face hidden challenges, (2) racial discrimination persists, (3) power dynamics perpetuate inaction, (4) interpersonal actions foster safety and equity, and (5) system-level change is needed for cultural shift.
    CONCLUSIONS: Understanding the race and role power dynamics within care teams, including experiences of staff members with less power, is critical to advancing DEI in health care.
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  • 文章类型: Journal Article
    目的:从1982年的Pelotas出生队列研究中,研究成年人的社会流动性与牙齿脱落之间的关系,以及种族是否改变了这种关系。
    方法:口腔健康研究使用了541名随访至31岁的个体的数据。社会流动性,由参与者在出生时和30岁时的社会经济地位(SEP)组成,被归类为从不贫穷,向上移动,向下移动,总是很差。结果是当参与者在31岁时接受检查时,由于龋齿而丢失的至少一颗牙齿的患病率。效果调节剂是种族(黑人/布朗与白人)。对数二项回归模型用于估计粗和性别调整后的患病率(PR),并确定其相关性是否随种族而变化。使用加法量表测试统计相互作用。
    结果:任何牙齿脱落的患病率为50.8%(n=274)。在社会流动群体中,在从不贫穷的人群中,至少有一颗牙齿脱落的患病率,黑人/布朗(68.2%)比白人(37.4%)高出约31%.在种族和社会流动性之间的相互作用中发现了拮抗性发现(SinergyIndex=0.48;95%CI0.24,0.99;由于相互作用而导致的相对超额风险=-1.38;95%CI-2.34,-0.42),表明所观察到的种族和社会流动性对牙齿脱落的联合影响低于这些因素的预期总和。对于那些一生中总是贫穷的人来说,黑人/布朗人的估计较小,相对于他们的白人同行。
    结论:研究结果表明,向下移动的SEP组和黑人/布朗人群中至少有一颗牙齿脱落的患病率更高。在从未经历过贫困的黑人/布朗人中发现了更大的种族不平等,与黑人/布朗人相比,至少有一颗牙齿脱落的患病率更高。
    OBJECTIVE: To examine the association between social mobility and tooth loss in adults from the 1982 Pelotas Birth Cohort Study and whether race modifies this association.
    METHODS: The Oral Health Study used data from 541 individuals who were followed up to 31 years of age. Social mobility, composed of the participants\' socioeconomic position (SEP) at birth and at age 30, was categorized as never poor, upwardly mobile, downwardly mobile and always poor. The outcome was the prevalence of at least one tooth lost due to dental caries when the participants were examined at 31 years of age. The effect modifier was race (Black/Brown versus white people). Log-binomial regression models were used to estimate crude and sex-adjusted prevalence ratios (PR) and to determine whether the association varied with race. Statistical interactions were tested using an additive scale.
    RESULTS: The prevalence of any tooth loss was 50.8% (n = 274). In social mobility groups, the prevalence of at least one tooth lost in the never-poor group was about 31% points higher for Black/Brown (68.2%) than for white people (37.4%). Antagonistic findings were found for the interaction between race and social mobility (Sinergy Index = 0.48; 95% CI 0.24, 0.99; and relative excess of risk due to the interaction = -1.38; 95% CI -2.34, -0.42), suggesting that the observed joint effect of race and social mobility on tooth loss was lower than the expected sum of these factors. The estimates for Black/Brown people were smaller for those who were always poor during their lives, relative to their white counterparts.
    CONCLUSIONS: The findings suggest a higher prevalence of at least one tooth lost among people in the downward mobile SEP group and Black/Brown people. Greater racial inequity was found among Black/Brown people who had never experienced episodes of poverty, with Black/Brown people having a greater prevalence of at least one tooth lost than their white counterparts.
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  • 文章类型: Journal Article
    与加拿大境内的非土著人口相比,加拿大的土著人民承受着不成比例的疾病负担,并且健康状况较差;据说这些疾病是由普遍和不间断的反土著种族主义所介导和加剧的。加拿大医学院的三年级和四年级医学生被要求反思他们在临床环境中与土著患者合作的经验,以及他们的临床前土著健康课程如何影响这些经历。
    使用现象学,以戈夫曼的社会污名理论为指导。使用有目的的抽样招募了11名本科医学生。进行了半结构化电话访谈,以深入了解参与者的经历。访谈被记录并逐字转录。使用现象学分析的四个主要过程对数据进行了分析。
    学生对涉及土著患者的临床经验的描述中出现了四个主要主题:1)学生描述了他们的土著患者在这种情况下如何遇到医疗保健系统以及他们自己缺乏文化敏感性;2)种族主义在学生与土著患者的临床互动中很明显,但是学生并不总是意识到这些偏见,也不总是意识到这对患者护理的影响;3)确定种族主义对护理的影响因情境临床遭遇而变得复杂;4)学生希望临床前土著健康教育的实用性,为他们在临床环境中与土著患者合作做好准备。
    在他们的临床经验中,学生们目睹了针对土著人民的种族主义,但却没有准备好反对它。研究结果强调了加强本科医学培训的重要性,以使学生更好地了解土著患者的独特经历和观点。结果支持需要持续的土著健康教育,培养文化敏感的经验,同时了解土著患者。
    UNASSIGNED: Indigenous Peoples in Canada bear a disproportionate burden of disease and experience poorer health outcomes as compared to non-Indigenous populations within Canada; these conditions are said to be mediated and exacerbated by pervasive and uninterrupted anti-Indigenous racism. Third and fourth-year medical students at a Canadian medical school were asked to reflect on their experiences working with Indigenous patients in clinical settings, and how their preclinical Indigenous health curriculum impacted these experiences.
    UNASSIGNED: Phenomenology was used, guided by Goffman\'s theory of social stigma. Eleven undergraduate medical students were recruited using purposeful sampling. Semi-structured phone interviews were conducted to gain an in-depth understanding of the participants\' experiences. Interviews were recorded and transcribed verbatim. Data were analyzed using the four main processes for phenomenological analysis.
    UNASSIGNED: Four main themes emerged from students\' descriptions of clinical experiences involving Indigenous patients: 1) students describe how their Indigenous patients encounter the health care system and their own lack of cultural sensitivity in this context; 2) racism was evident in students\' clinical interactions with Indigenous patients, but students do not always perceive these biases nor the impact of this on patient care; 3) identifying the impact of racism on care is complicated by situational clinical encounters; and 4) practicality of preclinical Indigenous health education is desired by students to prepare them for working with Indigenous patients in the clinical setting.
    UNASSIGNED: In their clinical experiences, students witness racism against Indigenous peoples yet are unprepared to stand up against it. Findings highlight the importance of enhancing undergraduate medical training to allow students to better understand the unique experiences and perspectives of Indigenous patients. The results support the need for ongoing Indigenous health education, to foster culturally sensitive experiences while learning about Indigenous patients.
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  • 文章类型: Journal Article
    This article aimed to analyze how institutional racism at a Brazilian public university affects the lives of Black students. This mixed study was developed by applying an online self-administered questionnaire to university students who self-declared as Blacks. Quantitative data were analyzed using descriptive statistics, bivariate analysis using chi-square, and multinomial logistic regression. Qualitative data analysis was performed using IRAMUTEQ. Sixty-eight (54.4%) of the 125 respondents claimed to have suffered racism at least once within the university. We noticed that racist situations experienced by Black people within the university environment call into question the student\'s self-confidence and motivation, directly affecting their mental health and performance in the course. The importance of receptive groups for strengthening students\' belonging was highlighted.
    O objetivo do artigo foi analisar como o racismo institucional em uma universidade pública brasileira afeta a vida de estudantes negros e negras. Trata-se de um estudo misto, desenvolvido por meio da aplicação de questionário autoaplicado online a estudantes universitários que se autodeclararam negros. Os dados quantitativos foram analisados por estatística descritiva, análise bivariável por meio do qui-quadrado e regressão logística multinominal. A análise dos dados qualitativos foi feita no Iramuteq. Do total de 125 respondentes, 68 (54,4%) afirmaram ter sofrido racismo pelo menos uma vez dentro da universidade. Percebeu-se que as situações racistas vividas pelas pessoas negras dentro do ambiente universitário colocam em questão a autoconfiança e a motivação do estudante, afetando diretamente a sua saúde mental e seu desempenho no curso. Evidenciou-se a importância dos coletivos para acolhimento e fortalecimento do pertencimento dos estudantes.
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  • 文章类型: Journal Article
    本研究通过叙事定性分析,探索了在夫妻和家庭治疗(CFT)领域促进包容性和反种族主义工作作为绩效或深层工作的经验。虽然基于绩效的方法侧重于满足外部期望和多样性配额,深度工作包括批判性的自我反省,持续学习,并致力于解决系统性不平等问题。本文优先考虑深度包容如何帮助开发新的方法来创造有意义和持久的教学变革,研究,以及CFT领域的临床工作。该领域的一些专业人士包括教育工作者,研究人员,从事反种族主义工作的治疗师,承认系统性种族主义对家庭动态和治疗干预的影响,以及致力于以边缘化个人和社区的声音和经验为中心。暗示需要持续的教育,培训,并支持CFT领域和其他家庭科学和家庭心理健康相关专业的专业人士。这项研究还确定了在家庭科学和家庭心理健康相关领域促进包容和反种族主义工作的局限性和未来研究方向。必须促进包容和反种族主义,作为创造更具包容性和公平的教学的深入工作,研究,以及重视所有个人和社区经验的治疗环境。挑战包括抵制动摇系统,并使自己和他人在不舒服和持续的对话中变得脆弱。我们的主要目标是促进和激发对话的观点CFT和其他心理健康相关的专业人员正在采取的包容性和反种族主义工作的关系。
    This study explores the experience of promoting inclusion and anti-racism work as either performance or deep work in the couple and family therapy (CFT) field through narrative qualitative analysis. While performance-based approaches focus on meeting external expectations and diversity quotas, deep work involves critical self-reflection, ongoing learning, and a commitment to addressing systemic inequalities. The paper prioritizes how deep inclusion assists with developing new approaches to creating meaningful and lasting change in teaching, research, and clinical work in the CFT field. Some professionals in the field include educators, researchers, and therapists who are engaged in anti-racism work, a recognition of the impact of systemic racism on family dynamics and therapeutic interventions, and a commitment to centering the voices and experiences of marginalized individuals and communities. Implications present a need for ongoing education, training, and support for professionals in the CFT field and other family science and family mental health-related professions. This study also identifies limitations and future directions for research in promoting inclusion and anti-racism work in family science and family mental health-related fields. It is essential to promote inclusion and anti-racism as deep work to create more inclusive and equitable teaching, research, and therapeutic environments that value the experiences of all individuals and communities. Challenges include resistance from shaking systems and making ourselves and others vulnerable with uncomfortable and continuous conversations. Our primary goal is to contribute to and inspire dialogue about the perspectives CFTs and other mental health-related professionals are taking in the relationship to inclusion and anti-racism work.
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  • 文章类型: Observational Study
    背景:尽管在健康和健康结果的社会决定因素中越来越关注种族不平等,较少关注的是结构性障碍——嵌入在项目中并编入法律——如何塑造实现健康的机会。
    方法:为了更好地了解美国联邦政策如何针对人口层面的机会和健康的结构性障碍,我们进行了一项法律审查,以确定具有里程碑意义的联邦政策,这些政策可能影响健康的关键社会决定因素。然后,使用佐治亚州和美国五个邻近州(阿拉巴马州,佛罗里达,北卡罗来纳州,南卡罗来纳州,和田纳西州),我们进行了一项观察性案例研究,以检查获得医疗保健的最新趋势,住房,和教育,因为它们都与旨在缓解长期结构性障碍造成的不平等现象的全面联邦立法相关,并且每个都被《健康人2030》确定为健康的关键社会决定因素。
    结果:从2010年到2021年,健康保险费率在人口水平上有所改善,抵押和租金负担,和教育程度,格鲁吉亚的黑人和白人人口都有所改善,在东南地区,在美国全国。然而,在健康的社会决定因素中,黑人和白人之间看似有意义的差距在任何地理层面都没有消除。
    结论:这项分析增加了越来越多的证据,表明历史上种族化的社会结构阻碍了黑人人口积累财富的机会,获得高质量的教育,在一个充满机会的社区拥有一个家,并获得医疗保健,与他们的白人同龄人相比。鉴于健康差距和不平等的根源在于健康的交叉点,卫生保健,经济学,教育,和其他社会制度,需要采取多部门的政策方法来解决这些系统性问题。虽然联邦法律确实为社会变革提供了近端利益的动力,在现代联邦制中,它们本身不足以解决所需的地方制度变革和非法律政策干预,在地方方案一级实施,可以作为补充机制来解决机会均等障碍的挥之不去的影响。
    BACKGROUND: Despite increasing attention to racial inequities in social determinants of health and health outcomes, less attention has been focused on how structural barriers - embedded in programs and codified in laws - shape opportunities to achieve health.
    METHODS: To better understand how U.S. federal policies targets structural barriers to opportunity and health at the population level, we conducted a legal review to identify landmark pieces of federal policy that held potential to impact key social determinants of health. Then, using publicly available data for Georgia and five neighboring U.S. states (Alabama, Florida, North Carolina, South Carolina, and Tennessee), we conducted an observational case study to examine recent trends for access to health care, housing, and education because they were each associated with comprehensive federal legislation meant to alleviate inequities resulting from long-standing structural barriers and were each identified by Healthy People 2030 as key social determinants of health.
    RESULTS: From 2010 to 2021, population-level improvements were seen in health insurance rates, mortgage and rental burden, and educational attainment, with improvements seen for both Black and White populations in Georgia, regionally in the Southeast region, and nationally in the United States. However, seemingly meaningful gaps between the Black and White populations across social determinants of health have not been eliminated at any geographical level.
    CONCLUSIONS: This analysis adds to a growing body of evidence that historically racialized social structures hamper Black populations\' opportunities to build wealth, gain a quality education, own a home in a neighborhood of opportunity, and access health care, compared to their White peers. Given that the root causes of health disparities and inequities lie at the intersection of health, health care, economics, education, and other social systems, a multisectoral approach to policy is needed to address these systemic issues. While federal laws do provide momentum for proximal benefits for social change, in modern federalism they alone are insufficient to address needed local system change and nonlegal policy interventions, implemented at the local programmatic level, may serve as complementary mechanism to address the lingering effects of barriers to equal opportunity.
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  • 文章类型: Journal Article
    系统性种族主义在美国社会普遍存在,不成比例地限制了受教育的机会,工作,以及历史上边缘化和少数族裔群体的健康,使其成为社会正义的紧迫问题。因为系统性种族主义是多种社会和体制结构中普遍存在的健康的社会决定因素,它需要使用有效的设计和分析方法来衡量和评估结果的多层次干预方法。种族主义是健康状况不佳的根本原因,包括心理健康结果;因此,解决种族主义和歧视的精神卫生服务和方案是促进种族和少数民族青年积极心理健康的关键。虽然多层次干预非常适合改善青年心理健康差距等结果,他们的评估带来了独特的方法论挑战,需要专门的设计和分析方法。在如何使用平衡方法严谨的方法测试多层次干预措施方面,研究人员提供的方法学指导有限,实用性,以及利益相关者群体的可接受性,特别是在受系统性种族主义影响最大的社区内。本文通过提供一个如何严格评估假设的例子来解决这一差距,理论基础上,多层次干预在美国三个学校系统中使用反种族主义方法在宏观干预促进心理健康公平(即,学校系统),中观-(即,School),和微观(即,家庭和学生)水平,以改善青少年的心理健康。我们描述了设计,样本量考虑因素,和分析方法,综合评价其有效性,同时探索各成分协同作用改善结果的程度。所提出的方法论方法可以适应其他多层次的干预措施,包括解决宏观,中观-,和微观层面的影响。
    Systemic racism is pervasive in US society and disproportionately limits opportunities for education, work, and health for historically marginalized and minoritized racial and ethnic groups, making it an urgent issue of social justice. Because systemic racism is a social determinant of health prevalent across multiple social and institutional structures, it requires multilevel intervention approaches using effective designs and analytic methods to measure and evaluate outcomes. Racism is a fundamental cause of poor health outcomes, including mental health outcomes; thus, mental health services and programs that address racism and discrimination are key to promoting positive mental health of racial and ethnic minority youth. While multilevel interventions are well-suited for improving outcomes like youth mental health disparities, their evaluation poses unique methodological challenges, requiring specialized design and analytic approaches. There has been limited methodological guidance provided to researchers on how to test multilevel interventions using approaches that balance methodological rigor, practicality, and acceptability across stakeholder groups, especially within communities most affected by systemic racism. This paper addresses this gap by providing an example of how to rigorously evaluate a hypothetical, theoretically based, multilevel intervention promoting mental health equity in three US school systems using an anti-racist approach intervening at the macro- (i.e., school system), meso- (i.e., school), and micro- (i.e., family and student) levels to improve mental health in adolescents. We describe the design, sample size considerations, and analytic methods to comprehensively evaluate its effectiveness while exploring the extent to which the components interact synergistically to improve outcomes. The methodological approach proposed can be adapted to other multilevel interventions that include strategies addressing macro-, meso-, and micro-levels of influence.
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  • 文章类型: Clinical Trial Protocol
    经济不平等系统地影响黑人新兴成年人(BEA),18-24岁,以及他们进入成年的健康轨迹。保证收入(GI)-临时,无条件现金支付——作为解决几十年结构性种族主义和撤资缝制的资源分配不公平的政策解决方案,正在获得牵引力。GI为收件人提供安全性,时间,和支持,使他们过渡到成年,并显示改善精神和身体健康结果的希望。迄今为止,很少有GI飞行员针对新兴成年人。BEEM试验旨在确定向BEA提供GI是否会改善财务状况,精神和身体健康是解决健康差距的一种手段。
    使用随机对照交叉试验设计,300家来自旧金山和奥克兰的低收入BEA,加州,在随访的前12个月(I期)或总共24个月随访的后12个月(II期)中,随机接受$500/月GI。所有参与者都可以参加可选的同伴讨论组和财务指导,以增强财务能力。主要意向治疗分析将使用广义估计方程(GEE)评估I期GI接受者在12个月时与等待名单手臂参与者相比的GI影响。主要成果包括:(a)财务状况良好(投资于教育/培训);(b)精神健康状况(抑郁症状);(c)精神健康和性健康及生殖健康服务的需求未得到满足。二级分析将使用GEE和因果推断方法来检查可选的财务能力组成部分的影响,以调整各个子阶层的差异。我们还将探讨付款结束后GI影响消散的程度。研究结果将在整个研究期间每3个月通过调查收集。由36名参与者组成的嵌套纵向定性队列将进一步阐明GI如何影响这些结果。我们还讨论了反种族主义实践如何指导干预设计,评估设计,和执行。
    研究结果将提供第一个实验证据,证明有针对性的GI与互补的财务计划相结合是否可以改善财务状况,心理健康,以及城市BEA未满足的卫生服务需求。结果将为利用GI作为减少健康差异的政策工具提供及时的证据。
    https://clinicaltrials.gov,标识符NCT05609188。
    Economic inequity systematically affects Black emerging adults (BEA), aged 18-24, and their healthy trajectory into adulthood. Guaranteed income (GI)-temporary, unconditional cash payments-is gaining traction as a policy solution to address the inequitable distribution of resources sewn by decades of structural racism and disinvestment. GI provides recipients with security, time, and support to enable their transition into adulthood and shows promise for improving mental and physical health outcomes. To date, few GI pilots have targeted emerging adults. The BEEM trial seeks to determine whether providing GI to BEA improves financial wellbeing, mental and physical health as a means to address health disparities.
    Using a randomized controlled crossover trial design, 300 low-income BEA from San Francisco and Oakland, California, are randomized to receive a $500/month GI either during the first 12-months of follow-up (Phase I) or during the second 12-months of a total of 24-months follow-up (Phase II). All participants are offered enrollment in optional peer discussion groups and financial mentoring to bolster financial capability. Primary intention-to-treat analyzes will evaluate the impact of GI at 12 months among Phase I GI recipients compared to waitlist arm participants using Generalized Estimating Equations (GEE). Primary outcomes include: (a) financial well-being (investing in education/training); (b) mental health status (depressive symptoms); and (c) unmet need for mental health and sexual and reproductive health services. Secondary analyzes will examine effects of optional financial capability components using GEE with causal inference methods to adjust for differences across sub-strata. We will also explore the degree to which GI impacts dissipate after payments end. Study outcomes will be collected via surveys every 3 months throughout the study. A nested longitudinal qualitative cohort of 36 participants will further clarify how GI impacts these outcomes. We also discuss how anti-racism praxis guided the intervention design, evaluation design, and implementation.
    Findings will provide the first experimental evidence of whether targeted GI paired with complementary financial programming improves the financial well-being, mental health, and unmet health service needs of urban BEA. Results will contribute timely evidence for utilizing GI as a policy tool to reduce health disparities.
    https://clinicaltrials.gov, identifier NCT05609188.
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  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    种族不平等的发生率,发病率,和死亡率是系统性红斑狼疮(SLE)的决定性特征.卫生保健系统是解决这些不平等的组成部分。然而,强调黑色SLE护理经验的定性证据是有限的。
    根据患有SLE的黑人成年人的经验和观点,确定改善SLE护理的机会。
    在这项定性研究中,使用解释性描述方法,并使用归纳主题分析对数据进行分析.对密歇根州被诊断患有SLE的黑人成年人进行了半结构化访谈。采访发生在2021年11月2日至2022年7月19日,数据分析发生在2022年5月6日至2023年4月12日。
    对访谈的鉴定笔录进行了分析,以制定主题,重点关注改善护理质量和症状管理的机会。
    参与者包括30名患有SLE的黑人成年人(97%为女性;平均年龄,41年;范围,18-65岁)。确定了四个主要主题:(1)诊断前对SLE体征和症状的认识(参与者强调诊断延迟以及如何在其家庭和社区中限制有关SLE的知识);(2)患者与临床医生的互动(参与者在医疗保健环境中面临歧视,并谈论了协调和支持性医疗保健团队的价值);(3)药物依从性和健康影响(参与者经历了一系列治疗SLE的药物的不良反应,以及其他持续治疗方案的监测和在疾病管理的背景下,参与者强调了行为改变的重要性和社会风险因素的负面影响。
    这项定性研究的结果表明,关于SLE的信息有限,种族主义的经验,治疗方案,社会风险因素可能会影响黑人SLE患者。未来的研究应在治疗和干预发展的背景下进一步参与并包括黑人社区,以减少种族不平等。
    Racial inequities in incidence, morbidity, and mortality are a defining feature of systemic lupus erythematosus (SLE). Health care systems are integral to addressing these inequities. However, qualitative evidence that highlights Black SLE care experiences is limited.
    To identify opportunities for improving SLE care based on the experiences and perspectives of Black adults with SLE.
    In this qualitative study, an interpretive description approach was used and data were analyzed using inductive thematic analysis. Semistructured interviews with Black adults in Michigan who were diagnosed with SLE were conducted. Interviews occurred from November 2, 2021, to July 19, 2022, and data analysis occurred from May 6, 2022, to April 12, 2023.
    Deidentified transcripts from the interviews were analyzed to develop themes that focused on opportunities to improve quality of care and symptom management.
    The participants included 30 Black adults with SLE (97% women; mean age, 41 years; range, 18-65 years). Four main themes were identified: (1) awareness of SLE signs and symptoms before diagnosis (participants emphasized delays in diagnosis and how knowledge concerning SLE could be limited in their families and communities); (2) patient-clinician interactions (participants faced discrimination in health care settings and talked about the value of coordinated and supportive health care teams); (3) medication adherence and health effects (participants experienced a range of adverse effects from medications that treat SLE and described how monitoring medication use and efficacy could inform tailored care approaches); and (4) comprehensive care plans after diagnosis (participants reported persistent pain and other symptoms despite treatment). In the context of disease management, participants emphasized the importance of behavioral change and the negative impact of social risk factors.
    The findings of this qualitative study suggest how limited information about SLE, experiences of racism, treatment regimens, and social risk factors may affect Black people with SLE. Future research should further engage and include Black communities within the context of treatment and intervention development to reduce racial inequities.
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