Department of Psychology, College of Arts and Sciences, University of South Carolina, Columbia, SC, United States.
South Carolina SmartState Center for Healthcare Quality, Department of Health Promotion, Education, and Behavior, Arnold School of Public Health, University of South Carolina, Columbia, SC, United States.
J Pediatr Psychol. 2024 Sep 1;49(9):616-627. doi: 10.1093/jpepsy/jsae047.
Youth living with HIV (YLHIV) in the southern United States experience poor outcomes across the HIV care continuum and are at high-risk for virologic failure. This study used a qualitative, community-engaged approach to inform the development of a tailored mobile Health (mHealth) tool for YLHIV in South Carolina (SC).
Semistructured qualitative interviews were conducted with YLHIV in SC (n = 16) and their HIV care providers (n = 15). Focus group discussions (FGDs) were also conducted with HIV-focused community-based organization staff (n = 23). Interviews and FGDs queried desired components for a future mHealth tool tailored for YLHIV. Data were analyzed using a team-based rapid qualitative approach.
Across informants, key themes emerged related to medical management of HIV, including a desire for connections with medical providers, appointment and medication reminders, and accurate HIV information. In addition, informants voiced a desire for mental health resources to be integrated into the app. Connection with HIV-positive peers also emerged as a key desire from youth informants. In terms of app design, informants emphasized the need for strict privacy practices, a youth-friendly design, compensation for use, and integration with existing healthcare systems.
mHealth interventions developed for YLHIV should meet the mental health and social needs of YLHIV in addition to their medical needs. In addition, the highly stigmatized nature of HIV requires careful consideration when designing digital tools-youth want their privacy prioritized, but also express strong desire for social support to help cope with the isolation and stigma of this chronic health condition.
美国南部的青年艾滋病毒感染者（YLHIV）在整个艾滋病毒护理连续体中都面临着不良结局，并且有很高的病毒学失败风险。本研究采用定性、社区参与的方法，为南卡罗来纳州（SC）的 YLHIV 开发一款定制的移动健康（mHealth）工具。
对 SC 的 YLHIV（n=16）及其艾滋病毒护理提供者（n=15）进行半结构式定性访谈。还与艾滋病毒为重点的社区组织工作人员（n=23）进行了焦点小组讨论（FGD）。访谈和 FGD 询问了为 YLHIV 定制的未来 mHealth 工具所需的组件。使用基于团队的快速定性方法分析数据。
在所有信息提供者中，出现了与 HIV 管理相关的关键主题，包括与医疗提供者建立联系、预约和用药提醒以及获取准确的 HIV 信息的愿望。此外，信息提供者表示希望将心理健康资源纳入应用程序。青年信息提供者还表达了与 HIV 阳性同伴建立联系的愿望。在应用程序设计方面，信息提供者强调需要严格的隐私保护措施、适合青年的设计、使用补偿以及与现有医疗系统的整合。
为 YLHIV 开发的 mHealth 干预措施除了满足 YLHIV 的医疗需求外，还应满足他们的心理健康和社会需求。此外，艾滋病毒的高度污名化性质在设计数字工具时需要仔细考虑——年轻人希望隐私得到优先考虑，但也强烈希望得到社会支持，以帮助应对这种慢性健康状况的孤立和耻辱感。
