Nothing About Us Without RIGHTS-Meaningful Engagement of Children and Youth: From Research Prioritization to Clinical Trials, Implementation Science, and Policy
Nothing About Us Without RIGHTS-Meaningful Engagement of Children and Youth: From Research Prioritization to Clinical Trials, Implementation Science, and Policy
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DOI：
10.1097/qai.0000000000001746
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发表时间：
2018-08-15
影响因子：
3.6
通讯作者：
Armstrong, Alice
中科院分区：
文献类型：
--
作者：
Oliveras, Carlo;Cluver, Lucie;Armstrong, Alice
本文提出了青年在指导研究和政策方面有意义参与的新议程。它是与艾滋病毒感染者和受其影响的青年、青少年和儿童共同开发的。我们提出了6项基本要求（我们称之为权利），适用于临床试验、观察性研究、实施科学、服务提供和政策制定。这些要求是根据十多年来在艾滋病毒/艾滋病流行病方面进行的文献审查和与儿童、青少年和青年的深入协商提出的。青年的参与必须有充足的时间、培训、技术支持和资金。它必须具有影响力，让青年了解他们的投入如何被直接用于研究、政策和规划。它必须是真实的，年轻人理解项目的意图并选择参与。至关重要的是，我们必须确保参与是无害的，并对青年的情感和精神健康需求作出反应。参与的过程应该是青少年友好的，设计得令人愉快并与青少年的优先事项相关。最后，关于技能建设，参与应使所培养的能力和技能在青年教育和职业经验中得到承认（如果不适合年轻人，则不宣传艾滋病毒方面的内容）。我们建议这6项基本要求得到所有研究机构的认可，并成为艾滋病毒应对研究的核心组成部分。
This article presents a new agenda for the meaningful engagement of youth in guiding research and policy. It has been codeveloped with youth, adolescents, and children who are living with and affected by HIV. We set out 6 basic requirements (we call them RIGHTS) that hold across clinical trials, observational studies, implementation science, service delivery, and policy development. These requirements are based on a literature review and in-depth consultations with children, adolescents, and youth, which have taken place over a decade in the HIV/AIDS epidemic. Youth engagement must be adequately Resourced with time, training, technical support, and funds. It must be Impactful, with youth informed of how their inputs have been directly used in research, policy, and programming. It must be Genuine, with youth understanding the intentions of the project and choosing to take part. It is essential that we ensure that participation is Harmless, and that it is responsive to the emotional and mental health needs of youth. Processes of participation should be Teen friendly, designed to be enjoyable and relevant to youth priorities. Finally, regarding Skills building, participation should allow for the competencies and skills developed to be recognized in youth education and career experience (without advertising the HIV aspect if this is inappropriate for young people). We propose that these 6 basic requirements be endorsed by all research organizations, and that they become a core component of research in the HIV response.