PDF(Pubmed)
Abstract：
For Black children with sickle cell disease (SCD) and their families, high disease stigmatization and pervasive racism increase susceptibility to discrimination in healthcare settings. Childhood experiences of discrimination can result in medical nonadherence, mistrust of healthcare providers, and poorer health outcomes across the lifespan. Caregivers and medical providers are essential to childhood SCD management and are therefore well-positioned to provide insight into discrimination in the context of pediatric SCD. This mixed-methods study sought caregivers\' and providers\' perspectives on processes underlying discrimination and potential solutions to mitigate the negative effects of perceived discrimination among children with SCD. Caregivers (N = 27) of children with SCD (≤ 12 years old) and providers from their hematology clinics (N = 11) participated in individual semi-structured interviews exploring experiences of discrimination and daily SCD management and completed a quantitative measure of discrimination. Qualitative data were collected until themes reached saturation and subsequently transcribed verbatim, coded, and analyzed using applied thematic analysis. Quantitative and qualitative data converged to suggest the pervasiveness of discrimination in healthcare settings. Three qualitative themes emerged: (1) healthcare system factors underlie discrimination, (2) families\' challenging interactions with providers lead to perceptions of discrimination, and (3) experiences of discrimination impact caregiver-provider interactions. Both caregivers and providers highlighted building trusting patient-provider relationships and encouraging patients\' self-advocacy as means to reduce experiences and impacts of discrimination. These findings offer potential approaches to tangibly mitigate occurrences of discrimination in pediatric healthcare settings by trust building, accountability keeping, and fostering rapport to improve quality of care and pediatric SCD health outcomes.
摘要：
对于患有镰状细胞病（SCD）的黑人儿童及其家人，高度的疾病污名化和普遍的种族主义增加了医疗保健环境中对歧视的敏感性。童年的歧视经历会导致医疗不坚持，对医疗保健提供者的不信任，以及整个生命周期中较差的健康结果。护理人员和医疗提供者对儿童SCD管理至关重要，因此可以很好地了解儿科SCD背景下的歧视。这项混合方法研究寻求照顾者和提供者对潜在歧视过程的观点和潜在解决方案，以减轻SCD儿童中感知到的歧视的负面影响。SCD儿童（≤12岁）的护理人员（N=27）和血液学诊所的提供者（N=11）参加了个人半结构化访谈，探索了歧视和日常SCD管理的经验，并完成了歧视的定量测量。收集定性数据，直到主题达到饱和，随后逐字转录，编码,并使用应用专题分析法进行分析。定量和定性数据融合在一起，表明歧视在医疗机构中的普遍性。出现了三个定性主题：(1)歧视背后的医疗保健系统因素，(2)家庭与提供者的挑战性互动导致对歧视的看法，和(3)歧视的经历会影响护理人员与提供者的互动。护理人员和提供者都强调建立信任患者与提供者的关系，并鼓励患者自我倡导，以减少歧视的经历和影响。这些发现提供了潜在的方法，可以通过建立信任来切实减轻儿科医疗机构中歧视的发生，保持问责制，并促进融洽关系，以提高护理质量和儿科SCD健康结局。
