Department of Health Systems Design and Global Health, Arnhold Institute for Global Health, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
Moi University School of Arts and Social Sciences, Eldoret, Kenya.
J Int Assoc Provid AIDS Care. 2023 Jan-Dec;22:23259582231170732. doi: 10.1177/23259582231170732.
HIV stigma affects medication adherence, psychosocial outcomes, and clinical management for youth living with HIV (YLWH). We explored the impact of HIV stigma on research participation, to inform the ethical engagement of this vulnerable group. We interviewed 40 YLWH, 20 caregivers, and 39 subject matter experts (SMEs); transcripts were analyzed by HK and EG, with emerging themes confirmed by JA and AC. All categories of participants identified the impacts of stigma on YLWH research participation, suggesting implementing privacy protections, considering recruitment locations carefully, and developing supportive relationships with YLWH. SMEs suggested that YLWH experience uniquely high risks from stigma due to the compounding effects of developmental challenges and transitionary life period. Accidental HIV disclosure and subsequent stigma were identified as a risk of research participation; some viewed the creation of community through research as a benefit. Participants provided insights into stigma-related considerations for research with YLWH, which may guide engagement protocols.
艾滋病毒污名影响了青少年感染艾滋病毒(YLWH)患者的药物依从性、心理社会结果和临床管理。我们探讨了艾滋病毒污名对研究参与的影响,以告知这一弱势群体的伦理参与。我们采访了 40 名 YLWH、20 名照顾者和 39 名主题专家(SMEs);HK 和 EG 对转录本进行了分析,JA 和 AC 确认了新出现的主题。所有类别的参与者都确定了污名对 YLWH 研究参与的影响,建议实施隐私保护措施,仔细考虑招募地点,并与 YLWH 建立支持性关系。SMEs 表示,YLWH 由于发育挑战和过渡性生命阶段的综合影响,经历了独特的高污名风险。意外的艾滋病毒披露和随后的污名将被视为研究参与的风险;一些人认为通过研究建立社区是一种好处。参与者提供了有关与 YLWH 研究相关的污名考虑因素的见解,这些见解可能指导参与协议。