背景:青春期和青年期是镰状细胞病(SCD)患者的脆弱发育期,特别是考虑到社会不平等的影响,向成人医疗保健服务过渡的挑战,增加发病率和死亡率的风险。电力系统,如偏见的制度化和人际表现,可能会影响SCD的转移和成人护理的参与,通过他们对医疗过渡准备的影响;但这方面的研究是有限的。
目的:描述权力系统如何影响AYA社会生态模型中描述的过渡准备度因素,以促进患者的健康公平过渡准备度(SMART-E)框架,看护人,和从业者水平。
方法:小儿青少年和年轻人(AYA),转移的AYA,看护者,和从业人员参加了半结构化的焦点小组和个人访谈,以检查医疗保健过渡期间的健康公平性和权力系统。焦点小组/访谈通过更新的SMART-E框架使用演绎方法进行转录和编码。
结果:10例小儿AYA伴SCD,9个与SCD一起转移的AYA,八个看护人,九名从业者参加了焦点小组或访谈。记者的定性调查结果强调了权力系统的影响(例如,种族偏见和疾病耻辱)对知识的影响,技能和自我效能感,信念和期望,目标和动机,病人的情绪和心理社会功能,看护人,和从业者水平。
结论:关于AYA与SCD及其支持的过渡障碍,动力系统很普遍。结构,机构,应进一步确定并有针对性地进行干预。
BACKGROUND: Adolescence and young adulthood are vulnerable developmental periods for individuals with sickle cell disease (SCD), particularly given the impact of social inequities, challenges with transitioning to adult healthcare services, and increased risk for morbidity and mortality. Systems of power, such as institutionalized and interpersonal manifestations of bias, could impact SCD transfer and engagement in adult care through their influence on healthcare transition readiness; yet research in this area is limited.
OBJECTIVE: To characterize how systems of power impact transition readiness factors described in the Social-ecological Model of AYA Readiness for Transition to Promote Health Equity (SMART-E) framework at the patient, caregiver, and practitioner levels.
METHODS: Pediatric adolescents and young adults (AYA), transferred AYA, caregivers, and practitioners participated in semi-structured focus groups and individual interviews examining health equity and systems of power during healthcare transition. Focus groups/interviews were transcribed and coded using a deductive approach via the updated SMART-E framework.
RESULTS: Ten pediatric AYA with SCD, nine transferred AYA with SCD, eight caregivers, and nine practitioners participated in a focus group or interview. Qualitative findings across reporters emphasize the impact of systems of power (e.g., racial bias and disease stigma) on knowledge, skills and self-efficacy, beliefs and expectations, goals and motivation, and emotions and psychosocial functioning at the patient, caregiver, and practitioner levels.
CONCLUSIONS: Systems of power are prevalent with respect to transition barriers for AYA with SCD and their supports. Structural, institutional, and individual factors with potential to reduce the influence of systems of power should be further identified and targeted for intervention.