黑人成年人中系统性红斑狼疮与社会和职业环境的交集:定性研究。

IF 3.7 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Disability and Health Journal Pub Date : 2024-10-23 DOI:10.1016/j.dhjo.2024.101713
Deena Aboul-Hassan, Johari Summerville, Bhaavna Yalavarthi, Nikki Farahani, Christine Yu, Lillian Z Xiao, Sia Rajgarhia, Daniel J Clauw, J Michelle Kahlenberg, Melissa DeJonckheere, Rachel S Bergmans
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引用次数: 0

摘要

背景:黑人因系统性红斑狼疮(SLE)而导致的发病率和死亡率过高。社会和职业环境的特点可以防止不良健康后果的发生:我们旨在描述系统性红斑狼疮如何与黑人成年人的人际关系和就业相互交织,从而为有针对性的护理方法和公共政策提供信息,以减轻系统性红斑狼疮的种族不平等:我们采用了一种定性、解释性描述方法,对患有系统性红斑狼疮的黑人成年人进行了半结构化访谈。访谈指南包括有关系统性红斑狼疮诊断、对日常生活的影响以及症状管理的问题。我们利用归纳式主题分析法对去标识化的记录誊本进行了分析,并听取了研究对象代表的意见。我们的主题发展重点是系统性红斑狼疮(即症状、严重程度、管理)如何与人际关系和就业交织在一起:本研究共进行了 30 次访谈(97% 为女性,年龄范围为 18-65 岁)。参与者中有 30% 因失业或残疾而没有工作,23% 表示缺乏情感支持。我们的分析得出了三大主题:1)就业与系统性红斑狼疮之间的双向关系;2)与其他系统性红斑狼疮患者建立联系的积极和消极影响;3)与家人和朋友关系的调节作用以及对自我认同的影响:本研究描述了影响系统性红斑狼疮管理和健康的社会和职业环境特征。我们的研究结果突出了进一步研究的方向,可以确定并解决系统性种族主义如何影响系统性红斑狼疮中基于种族的不平等。
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The intersection of systemic lupus erythematosus with social and occupational environments among black adults: A qualitative study.

Background: Black people have disproportionately high morbidity and mortality due to systemic lupus erythematosus (SLE). Features of social and occupational environments can protect against poor health outcomes.

Objective: We aimed to characterize how SLE intersects with interpersonal relationships and employment among Black adults to inform tailored care approaches and public policies that could alleviate racial inequities in SLE.

Methods: We used a qualitative, interpretive description approach that involved semi-structured interviews with Black adults who had SLE. The interview guide included questions about SLE diagnosis, impacts on day-to-day life, and symptom management. We analyzed the de-identified transcripts using inductive, thematic analysis with input from representatives of the study population. Our theme development focused on how SLE (i.e., symptoms, severity, management) intersected with interpersonal relationships and employment.

Results: This study included 30 interviews (97 % female, age range = 18-65 years). Among participants, 30 % were not working due to unemployment or disability and 23 % reported a lack of emotional support. Our analysis resulted in three main themes: 1) The bi-directional relationship between employment and SLE; 2) The positive and negative effects of connecting with other people who have SLE; and 3) The moderating role of relationships with family and friends, and the impact on self-identity.

Conclusions: This study describes features of social and occupational environments that influence SLE management and wellbeing. Our results highlight directions for further study that could identify and address how systemic racism affects race-based inequities in SLE.

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来源期刊
Disability and Health Journal
Disability and Health Journal HEALTH CARE SCIENCES & SERVICES-PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH
CiteScore
7.50
自引率
6.70%
发文量
134
审稿时长
34 days
期刊介绍: Disability and Health Journal is a scientific, scholarly, and multidisciplinary journal for reporting original contributions that advance knowledge in disability and health. Topics may be related to global health, quality of life, and specific health conditions as they relate to disability. Such contributions include: • Reports of empirical research on the characteristics of persons with disabilities, environment, health outcomes, and determinants of health • Reports of empirical research on the Systematic or other evidence-based reviews and tightly conceived theoretical interpretations of research literature • Reports of empirical research on the Evaluative research on new interventions, technologies, and programs • Reports of empirical research on the Reports on issues or policies affecting the health and/or quality of life for persons with disabilities, using a scientific base.
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