ISPED, Centre INSERM U1219- Epidémiologie-Biostatistique, Université de Bordeaux, Bordeaux, France.
INSERM U1219, Centre Inserm Epidémiologie et Biostatistique, Université de Bordeaux, Bordeaux, France.
J Int AIDS Soc. 2018 Jul;21(7):e25157. doi: 10.1002/jia2.25157.
Disclosure of HIV status to HIV-infected children and adolescents is a major care challenge. We describe current site characteristics related to disclosure of HIV status in resource-limited paediatric HIV care settings within the International Epidemiology Databases to Evaluate AIDS (IeDEA) consortium.
An online site assessment survey was conducted across the paediatric HIV care sites within six global regions of IeDEA. A standardized questionnaire was administered to the sites through the REDCap platform.
From June 2014 to March 2015, all 180 sites of the IeDEA consortium in 31 countries completed the online survey: 57% were urban, 43% were health centres and 86% were integrated clinics (serving both adults and children). Almost all the sites (98%) reported offering disclosure counselling services. Disclosure counselling was most often provided by counsellors (87% of sites), but also by nurses (77%), physicians (74%), social workers (68%), or other clinicians (65%). It was offered to both caregivers and children in 92% of 177 sites with disclosure counselling. Disclosure resources and procedures varied across geographical regions. Most sites in each region reported performing staff members' training on disclosure (72% to 96% of sites per region), routinely collecting HIV disclosure status (50% to 91%) and involving caregivers in the disclosure process (71% to 100%). A disclosure protocol was available in 14% to 71% of sites. Among the 143 sites (79%) routinely collecting disclosure status process, the main collection method was by asking the caregiver or child (85%) about the child's knowledge of his/her HIV status. Frequency of disclosure status assessment was every three months in 63% of the sites, and 71% stored disclosure status data electronically.
The majority of the sites reported offering disclosure counselling services, but educational and social support resources and capacities for data collection varied across regions. Paediatric HIV care sites worldwide still need specific staff members' training on disclosure, development and implementation of guidelines for HIV disclosure, and standardized data collection on this key issue to ensure the long-term health and wellbeing of HIV-infected youth.
向 HIV 感染者的儿童和青少年披露 HIV 状况是一项重大的护理挑战。我们描述了资源有限的儿科 HIV 护理环境中，在国际艾滋病流行病学数据库以评估艾滋病（IeDEA）联盟内，目前与 HIV 状况披露相关的地点特征。
通过 IeDEA 的六个全球区域的儿科 HIV 护理地点，进行了在线地点评估调查。通过 REDCap 平台向这些地点发放了标准化问卷。
从 2014 年 6 月至 2015 年 3 月，IeDEA 联盟的 180 个地点（来自 31 个国家）全部完成了在线调查：57%是城市，43%是保健中心，86%是综合诊所（为成人和儿童提供服务）。几乎所有的地点（98%）都报告提供了披露咨询服务。披露咨询服务最常由咨询员提供（87%的地点），但也由护士（77%）、医生（74%）、社会工作者（68%）或其他临床医生（65%）提供。在有披露咨询的 177 个地点中的 177 个，有 92%的地点向照顾者和儿童提供。披露资源和程序因地理区域而异。每个区域的大多数地点都报告对披露工作人员进行了培训（每个区域的 72%至 96%的地点），常规收集 HIV 披露状况（每个区域的 50%至 91%），并让照顾者参与披露过程（每个区域的 71%至 100%）。14%至 71%的地点有披露协议。在 143 个（79%）经常收集披露状况过程的地点中，主要的收集方法是询问照顾者或儿童（85%）关于儿童对其 HIV 状况的了解。63%的地点每三个月评估一次披露状况，71%的地点以电子方式存储披露状况数据。
大多数地点都报告提供了披露咨询服务，但教育和社会支持资源以及数据收集能力因地区而异。世界各地的儿科 HIV 护理地点仍然需要对披露、制定和实施 HIV 披露指南进行专门的工作人员培训，并对这一关键问题进行标准化数据收集，以确保 HIV 感染者青少年的长期健康和福祉。
