Kenya Medical Research Institute Wellcome Trust Research Programme, Kilifi, Kenya.
Health Systems Collaborative, Centre for Global Health Research, Nuffield Department of Medicine, University of Oxford, Oxford, UK.
BMC Med Ethics. 2024 Feb 20;25(1):21. doi: 10.1186/s12910-023-00972-3.
Carefully planned research is critical to developing policies and interventions that counter physical, psychological and social challenges faced by young people living with HIV/AIDS, without increasing burdens. Such studies, however, must navigate a 'vulnerability paradox', since including potentially vulnerable groups also risks unintentionally worsening their situation. Through embedded social science research, linked to a cohort study involving Adolescents Living with HIV/AIDS (ALH) in Kenya, we develop an account of researchers' responsibilities towards young people, incorporating concepts of vulnerability, resilience, and agency as 'interacting layers'.
Using a qualitative, iterative approach across three linked data collection phases including interviews, group discussions, observations and a participatory workshop, we explored stakeholders' perspectives on vulnerability and resilience of young people living with HIV/AIDS, in relation to home and community, school, health care and health research participation. A total of 62 policy, provider, research, and community-based stakeholders were involved, including 27 ALH participating in a longitudinal cohort study. Data analysis drew on a Framework Analysis approach; ethical analysis adapts Luna's layered account of vulnerability.
ALH experienced forms of vulnerability and resilience in their daily lives in which socioeconomic context, institutional policies, organisational systems and interpersonal relations were key, interrelated influences. Anticipated and experienced forms of stigma and discrimination in schools, health clinics and communities were linked to actions undermining ART adherence, worsening physical and mental health, and poor educational outcomes, indicating cascading forms of vulnerability, resulting in worsened vulnerabilities. Positive inputs within and across sectors could build resilience, improve outcomes, and support positive research experiences.
The most serious forms of vulnerability faced by ALH in the cohort study were related to structural, inter-sectoral influences, unrelated to study participation and underscored by constraints to their agency. Vulnerabilities, including cascading forms, were potentially responsive to policy-based and interpersonal actions. Stakeholder engagement supported cohort design and implementation, building privacy, stakeholder understanding, interpersonal relations and ancillary care policies. Structural forms of vulnerability underscore researchers' responsibilities to work within multi-sectoral partnerships to plan and implement studies involving ALH, share findings in a timely way and contribute to policies addressing known causes of vulnerabilities.
精心策划的研究对于制定政策和干预措施至关重要，这些政策和干预措施旨在应对年轻人在感染艾滋病毒/艾滋病后面临的身体、心理和社会挑战，同时又不会增加负担。然而，此类研究必须应对“脆弱性悖论”，因为纳入可能脆弱的群体也有可能无意中使他们的处境恶化。通过嵌入式社会科学研究，结合肯尼亚艾滋病毒感染者青少年（ALH）的队列研究，我们详细说明了研究人员对年轻人的责任，将脆弱性、韧性和能动性等概念作为“相互作用的层面”纳入其中。
在三个相互关联的数据收集阶段（包括访谈、小组讨论、观察和参与式研讨会）中，我们采用定性、迭代的方法，探讨了利益攸关方对艾滋病毒感染者青少年在家庭和社区、学校、医疗保健和健康研究参与方面的脆弱性和韧性的看法。共有 62 名政策制定者、提供者、研究人员和社区利益攸关方参与其中，包括 27 名参与纵向队列研究的 ALH。数据分析借鉴了框架分析方法；伦理分析采用了 Luna 的脆弱性分层账户。
ALH 在日常生活中经历了各种形式的脆弱性和韧性，其中社会经济背景、机构政策、组织系统和人际关系是关键的、相互关联的影响因素。在学校、诊所和社区中预期和经历的污名化和歧视形式与破坏抗逆转录病毒治疗（ART）依从性、恶化身心健康和不良教育成果有关，表明存在脆弱性的级联形式，从而导致脆弱性恶化。在各个部门内部和跨部门提供的积极投入可以增强韧性、改善结果，并支持积极的研究体验。
该队列研究中，ALH 面临的最严重脆弱形式与结构性、跨部门影响有关，与研究参与无关，并受到他们能动性的限制。脆弱性，包括级联形式，可能对基于政策和人际行动做出反应。利益攸关方的参与支持了队列的设计和实施，建立了隐私、利益攸关方的理解、人际关系和辅助护理政策。结构性脆弱形式强调了研究人员的责任，即与多部门伙伴合作，规划和实施涉及 ALH 的研究，及时分享研究结果，并为解决已知脆弱性原因的政策做出贡献。
