Effects of Experienced Discrimination in Pediatric Sickle Cell Disease: Caregiver and Provider Perspectives.
Effects of Experienced Discrimination in Pediatric Sickle Cell Disease: Caregiver and Provider Perspectives.
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DOI：
10.1007/s40615-022-01483-4
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发表时间：
2023-12
影响因子：
3.9
通讯作者：
Long, Kristin A
中科院分区：
文献类型：
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作者：
Blakey, Ariel O;Lavarin, Claudine;Brochier, Annelise;Amaro, Christina M;Eilenberg, Jenna Sandler;Kavanagh, Patricia L;Garg, Arvin;Drainoni, Mari-Lynn;Long, Kristin A
对于患有镰状细胞病（SCD）的黑人儿童及其家人来说，高度的疾病污名化和普遍的种族主义增加了在医疗保健环境中受到歧视的可能性。童年时期的歧视经历可能导致医疗不依从，对医疗保健提供者的不信任，以及整个生命周期的健康状况较差。照顾者和医疗提供者是必不可少的儿童SCD管理，因此，很好地定位，以提供深入了解歧视的情况下，儿科SCD。这项混合方法的研究寻求照顾者和供应商的观点的过程中潜在的歧视和潜在的解决方案，以减轻感知歧视的儿童SCD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）参加了个体半结构化访谈，探索歧视和日常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、编码并使用应用主题分析进行分析。定量和定性数据表明，歧视在医疗保健环境中普遍存在。出现了三个质量主题：（1）医疗保健系统因素是歧视的基础，（2）家庭与提供者之间具有挑战性的互动导致了歧视的感觉，（3）歧视的经历影响了提供者与提供者之间的互动。照顾者和提供者都强调，建立信任的病人-提供者关系和鼓励病人自我宣传是减少歧视经历和影响的手段。这些研究结果提供了潜在的方法，通过建立信任，保持问责制，促进融洽关系，以改善护理质量和儿科SCD健康结果，从而切实减轻儿科医疗保健环境中的歧视发生。
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.