The Ryan White Center for Pediatric Infectious Disease and Global Health, Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Indianapolis, IN, 46202, USA.
Academic Model Providing Access To Healthcare (AMPATH), Eldoret, Kenya.
BMC Public Health. 2022 Jun 4;22(1):1122. doi: 10.1186/s12889-022-13519-9.
Adolescents living with HIV (ALHIV, ages 10-19) experience complex barriers to care engagement. Challenges surrounding HIV status disclosure or non-disclosure to adolescents may contribute to adolescent disengagement from HIV care or non-adherence to ART. We performed a qualitative study to investigate the contribution of disclosure challenges to adolescent disengagement from HIV care.
This was a qualitative study performed with disengaged ALHIV and their caregivers, and with healthcare workers (HCW) in the Academic Model Providing Access to Healthcare (AMPATH) program in western Kenya. Inclusion criteria for ALHIV were ≥1 visit within the 18 months prior to data collection at one of two clinical sites and nonattendance ≥60 days following their last scheduled appointment. HCW were recruited from 10 clinics. Analysis was conducted by multiple independent coders, and narratives of disclosure and care disengagement were closely interrogated. Overarching themes were elucidated and summarized.
Interviews were conducted with 42 disengaged ALHIV, 32 caregivers, and 28 HCW. ALHIV were average age 17.0 (range 12.9-20.9), and 95% indicated awareness of their HIV diagnosis. Issues surrounding disclosure to ALHIV presented important barriers to HIV care engagement. Themes centered on delays in HIV status disclosure; hesitancy and reluctance among caregivers to disclose; struggles for adolescents to cope with feelings of having been deceived prior to full disclosure; pervasive HIV stigma internalized in school and community settings prior to disclosure; and inadequate and unstructured support after disclosure, including for adolescent mental health burdens and for adolescent-caregiver relationships and communication. Both HCW and caregivers described feeling inadequately prepared to optimally handle disclosure and to manage challenges that may arise after disclosure.
Complex challenges surrounding HIV status disclosure to adolescents contribute to care disengagement. There is need to enhance training and resources for HCW, and to empower caregivers to support children and adolescents before, during, and after HIV status disclosure. This should include counseling caregivers on how to provide children with developmentally-appropriate and accurate information about their health from an early age, and to support adolescent-caregiver communication and relationships. Optimally integrating peer support can further promote ALHIV wellbeing and retention in care.
感染艾滋病毒的青少年（年龄 10-19 岁）在获得医疗服务方面面临着复杂的障碍。青少年可能难以披露或隐瞒自己的艾滋病毒状况，这可能导致他们脱离艾滋病毒护理或不遵守抗逆转录病毒治疗（ART）。我们进行了一项定性研究，以调查披露挑战对青少年脱离艾滋病毒护理的影响。
这是一项在肯尼亚西部学术模式提供医疗保健（AMPATH）项目中脱离护理的青少年感染者及其照顾者以及医疗保健工作者（HCW）中进行的定性研究。纳入标准为在数据收集前的 18 个月内至少在两个临床地点就诊一次，且最后一次预约后缺勤≥60 天。HCW 是从 10 个诊所招募的。分析由多个独立的编码员进行，对披露和护理脱离的叙述进行了仔细的审查。阐述和总结了主要主题。
对 42 名脱离护理的青少年感染者、32 名照顾者和 28 名 HCW 进行了访谈。青少年感染者的平均年龄为 17.0 岁（范围为 12.9-20.9 岁），95%的人表示知晓自己的艾滋病毒诊断。围绕向青少年感染者披露的问题是艾滋病毒护理参与的重要障碍。主题集中在艾滋病毒状况披露的延迟；照顾者在披露方面犹豫不决；青少年在完全披露之前应对被欺骗的感觉的困难；在披露之前，在学校和社区环境中内化了普遍存在的艾滋病毒耻辱感；以及披露后支持不足且缺乏结构，包括青少年的心理健康负担以及青少年-照顾者关系和沟通。HCW 和照顾者都表示，他们在处理披露问题和管理披露后可能出现的挑战方面准备不足。
向青少年感染者披露艾滋病毒状况的复杂挑战导致护理脱离。需要加强对 HCW 的培训和资源，赋予照顾者权力，在艾滋病毒状况披露之前、期间和之后为儿童和青少年提供支持。这应包括向照顾者提供关于如何从小就向儿童提供关于其健康的发展适当和准确信息的咨询，以及支持青少年-照顾者的沟通和关系。最佳地整合同伴支持可以进一步促进青少年感染者的健康和护理保留。
