Kigali University Teaching Hospital/Department of Pediatrics, Kigali, Rwanda.
PLoS One. 2013;8(4):e60073. doi: 10.1371/journal.pone.0060073. Epub 2013 Apr 3.
Adherence to combination antiretroviral therapy (cART) is vital for HIV-infected adolescents for survival and quality of life. However, this age group faces many challenges to remain adherent. We used multiple data sources (role-play, focus group discussions (FGD), and in-depth interviews (IDI)) to better understand adherence barriers for Rwandan adolescents. Forty-two HIV positive adolescents (ages 12-21) and a selection of their primary caregivers were interviewed. All were perinatally-infected and received (cART) for ≥ 12 months. Topics discussed during FGDs and IDIs included learning HIV status, disclosure and stigma, care and treatment issues, cART adherence barriers.
Median age was 17 years, 45% female, 45% orphaned, and 48% in boarding schools. We identified three overarching but inter-related themes that appeared to influence adherence. Stigma, perceived and experienced, and inadvertent disclosure of HIV status hampered adolescents from obtaining and taking their drugs, attending clinic visits, carrying their cARTs with them in public. The second major theme was the need for better support, in particular for adolescents with different living situations, (orphanages, foster-care, and boarding schools). Lack of privacy to keep and take medication came out as major barrier for adolescents living in congested households, as well the institutionalization of boarding schools where privacy is almost non-existent. The third important theme was the desire to be 'normal' and not be recognized as an HIV-infected individual, and to have a normal life not perturbed by taking a regimen of medications or being forced to disclose where others would treat them differently.
We propose better management of HIV-infected adolescents integrated into boarding school, orphanages, and foster care; training of school-faculty on how to support students and allow them privacy for taking their medications. To provide better care and support, HIV programs should stimulate caregivers of HIV-infected adolescents to join them for their clinic visits.
坚持使用复方抗逆转录病毒疗法（cART）对于感染艾滋病毒的青少年的生存和生活质量至关重要。然而，这个年龄段的人在保持依从性方面面临着许多挑战。我们使用了多种数据源（角色扮演、焦点小组讨论（FGD）和深入访谈（IDI））来更好地了解卢旺达青少年的依从性障碍。42 名艾滋病毒阳性青少年（12-21 岁）及其部分主要照顾者接受了采访。所有参与者均为围产期感染，接受（cART）治疗时间均≥12 个月。FGD 和 IDI 期间讨论的主题包括了解 HIV 状况、披露和耻辱感、护理和治疗问题、cART 依从性障碍。
中位年龄为 17 岁，45%为女性，45%为孤儿，48%就读于寄宿学校。我们确定了三个相互关联的主题，这些主题似乎影响了依从性。耻辱感，感知到的和经历过的，以及不经意间披露 HIV 状况，使青少年难以获得和服用药物、参加诊所就诊、在公共场合携带 cART。第二个主要主题是需要更好的支持，特别是对于有不同生活环境的青少年，（孤儿院、寄养家庭和寄宿学校）。对于居住在拥挤家庭中的青少年来说，缺乏保持和服用药物的隐私是一个主要障碍，寄宿学校的机构化也几乎没有隐私。第三个重要主题是希望“正常”，不被视为感染艾滋病毒的个体，拥有不受服用药物方案或被迫披露而扰乱的正常生活。
我们建议更好地管理感染艾滋病毒的青少年，将他们纳入寄宿学校、孤儿院和寄养家庭中；培训学校教师如何支持学生并允许他们在服用药物时保持隐私。为了提供更好的护理和支持，艾滋病毒规划应鼓励感染艾滋病毒的青少年的照顾者与他们一起参加诊所就诊。
