Vijayan Tara, Benin Andrea L, Wagner Krystn, Romano Sostena, Andiman Warren A
Department of Medicine, University of California, San Francisco, CA, USA.
AIDS Care. 2009 Oct;21(10):1222-9. doi: 10.1080/09540120902730054.
Transitioning the medical care of children with perinatally acquired HIV from pediatric care to internal medicine practices has become increasingly important as newer therapies prolong survival. The study aims to describe challenges to caring for these adolescents and the potential barriers to transitioning them to internal medicine-based care.
Qualitative study in which data were gathered from open-ended interviews conducted from November 2005 to April 2006 with 18 adolescents with HIV, 15 of their parents, and 9 pediatric health care providers from the Yale Pediatric AIDS Care Program, New Haven, Connecticut.
Issues of stigma played a prominent role in both the challenges to care and barriers to transitioning care. Challenges to care were: (1) poor adherence to medication regimens; (2) adolescent sexuality; and (3) disorganized social environments. Potential barriers to transitioning care were: (1) families' negative perceptions of and experiences with stigma of HIV disease - which undermined the desire to meet new providers; (2) perceived and actual lack of autonomy - pediatric providers feared that staff in adult clinics would demand a level of independence that adolescents did not have; and (3) difficulty letting go of relationships - adolescents, guardians, and providers described a familial relationship and expressed anxiety about terminating their relationships.
Understanding these challenges and barriers can inform both pediatric and adult HIV care providers and enable them to create successful transition programs, with the goal of improving retention and follow-up to care.
随着新型疗法延长了感染围生期获得性HIV儿童的生存期，将其医疗护理从儿科转至内科实践变得愈发重要。本研究旨在描述照料这些青少年所面临的挑战以及将他们转至以内科为主的护理存在的潜在障碍。
进行定性研究，于2005年11月至2006年4月对来自康涅狄格州纽黑文市耶鲁儿科艾滋病护理项目的18名感染HIV的青少年、其中15名青少年的父母以及9名儿科医疗服务提供者进行开放式访谈，收集数据。
耻辱问题在护理挑战和护理过渡障碍方面均发挥了突出作用。护理挑战包括：（1）药物治疗方案依从性差；（2）青少年性行为；（3）社会环境混乱。护理过渡的潜在障碍包括：（1）家庭对HIV疾病耻辱的负面认知和经历——这削弱了与新医疗服务提供者接触的意愿；（2）感知到的和实际存在的缺乏自主性——儿科医疗服务提供者担心成人诊所的工作人员会要求青少年具备他们所没有的独立性；（3）难以割舍关系——青少年、监护人及医疗服务提供者描述了一种家庭关系，并对终止他们的关系表示焦虑。
了解这些挑战和障碍可为儿科和成人HIV护理提供者提供信息，使他们能够创建成功的过渡项目，目标是提高护理的持续性和随访率。
