Bhagavathi Veena, Martyn-Dickens Charles, Owusu Sheila Agyeiwaa, Nettey Gustav, Bedele Jessica, Sarfo Ama D, Munyikwa Michelle, Moyer Cheryl A, Enimil Anthony, Ratner Leah
medRxiv. 2025 Jul 23:2025.07.22.25331754. doi: 10.1101/2025.07.22.25331754.
BACKGROUND: Adolescent girls and young women (AGYW) living with HIV in Ghana face multiple, intersecting forms of marginalization. Beyond the clinical management of HIV, little is known about how they construct meaning, navigate identity, and imagine their futures within structural contexts shaped by stigma, gender inequity, economic precarity and colonial legacies. OBJECTIVE: To explore how AGYW living with HIV in Ghana understand and negotiate their social identities in work and school. We then aimed to understand how their lived experiences at school and work are shaped by broader systems of power. METHODS: This qualitative study drew on semi-structured interviews with AGYW (ages 11-24, N = 24 receiving HIV care in Kumasi, Ghana. Data were coded both inductively and deductively. Themes were interpreted through the Ghanian context using intersectionality, Critical Disability Studies, spoiled identity theory and African Feminist decolonial theory. The analysis was conducted iteratively and reflexively, with attention to positionality, gender, and structural power dynamics. RESULTS: Seven major themes were identified: (1) social support; (2) concrete plans for the future; (3) unattainability of the future; (4) coping via detachment; (5) need for privacy and confidentiality; (6) role as arbiter of HIV information; and (7) financial stress. Across these themes, AGYW described dynamic processes of identity negotiation, moral and emotional labor, and structural constraint. HIV was rarely the sole barrier-rather, it intersected with gender norms, family dynamics, age hierarchies, economic marginalization, and misinformation to shape participants' social worlds. Some participants coped through detachment or concealment, while others reclaimed agency through caregiving roles, education, or aspirational goals. CONCLUSIONS: AGYW living with HIV in Ghana are not only navigating a chronic illness but also resisting a layered matrix of social and structural injustice. Their stories reveal both vulnerability and strategic agency. Interventions and policy must go beyond biomedical care to address stigma, provide confidential and affirming school and work environments, and offer structural supports for emotional, educational, and economic well-being. WHAT IS ALREADY KNOWN ON THIS TOPIC: Adolescent girls and young women (AGYW) in sub-Saharan Africa represent a disproportionately high share of new HIV infections and face intersecting structural barriers related to gender, age, and stigma.Existing literature has shown that AGYW living with HIV often experience interruptions in education, social exclusion, and reduced employment opportunities.While some studies have explored stigma or psychosocial distress, few have examined how AGYW themselves construct meaning around their identities or futures.Intersectionality is frequently cited in global health but rarely operationalized in qualitative research in low- and middle-income countries (LMICs), and even less so alongside frameworks like Critical Disability Studies (CDS) or spoiled identity theory. WHAT THIS STUDY ADDS: This study uses intersectionality, CDS, and spoiled identity theory in the context of Ghanaian culture to provide a nuanced analysis of how AGYW living with HIV experience and seek to overcome layered stigma in domains such as education, employment, romantic relationships, and family life.It reveals that HIV is not only a biomedical diagnosis, but a social identity entangled with broader systems of age-based power, ableism, gendered expectations and colonial identities.AGYW demonstrated agency through emotional detachment, strategic disclosure, and aspirational re-framing of their lives-navigating structural challenges with dignity, but often at high emotional cost.The findings show that resilience is often misinterpreted as individual strength when, in fact, it is evidence of institutional failure to provide supportive and affirming systems. HOW THIS STUDY MIGHT AFFECT RESEARCH PRACTICE OR POLICY: This study highlights the need for gender-and disability-responsive HIV programming that extends beyond adherence and viral suppression to address the moral, emotional, and social dimensions of living with HIV.It offers a model for applying intersectionality and CDS in qualitative research in LMIC settings, providing a replicable analytic approach for future studies.It calls on health and education systems-including institutions like the Ghana Education Service-to design inclusive trauma-informed, and decolonial policies that affirm the full humanity and aspirations of AGYW living with HIV.By recognizing AGYW as moral actors and arbiters of knowledge, the study suggests that program and policy design should be co-created with AGYW, not merely for them.
背景:在加纳,感染艾滋病毒的青春期女孩和年轻女性面临多种相互交织的边缘化形式。除了艾滋病毒的临床管理外,对于她们在受耻辱感、性别不平等、经济不稳定和殖民遗产影响的结构背景下如何构建意义、塑造身份以及憧憬未来,人们知之甚少。 目的:探讨加纳感染艾滋病毒的青春期女孩和年轻女性如何理解并在工作和学校中协商她们的社会身份。我们的目标还包括了解更广泛的权力体系如何塑造她们在学校和工作中的生活经历。 方法:这项定性研究采用了对年龄在11 - 24岁之间、在加纳库马西接受艾滋病毒护理的青春期女孩和年轻女性(N = 24)进行的半结构化访谈。数据采用归纳和演绎两种方式进行编码。通过加纳背景,运用交叉性理论、批判性残疾研究、受损身份理论和非洲女性主义去殖民化理论来解读主题。分析过程反复进行且具有反思性,同时关注位置性、性别和结构权力动态。 结果:确定了七个主要主题:(1)社会支持;(2)未来的具体计划;(3)未来难以实现;(4)通过超脱来应对;(5)对隐私和保密的需求;(6)作为艾滋病毒信息仲裁者的角色;(7)经济压力。在这些主题中,青春期女孩和年轻女性描述了身份协商、道德和情感劳动以及结构约束的动态过程。艾滋病毒很少是唯一的障碍——相反 , 它与性别规范、家庭动态、年龄等级制度、经济边缘化和错误信息相互交织,塑造了参与者的社会世界。一些参与者通过超脱或隐瞒来应对,而另一些人则通过照顾他人的角色、教育或抱负目标来重新获得能动性。 结论:在加纳,感染艾滋病毒的青春期女孩和年轻女性不仅要应对慢性病,还要抵制社会和结构不公正的多层矩阵。她们的故事既揭示了脆弱性,也展现了战略能动性。干预措施和政策必须超越生物医学护理,以解决耻辱感,提供保密且包容的学校和工作环境,并为情感、教育和经济福祉提供结构性支持。 关于该主题的已有认知:撒哈拉以南非洲的青春期女孩和年轻女性在新增艾滋病毒感染中占比过高,且面临与性别、年龄和耻辱感相关的交叉结构性障碍。现有文献表明,感染艾滋病毒的青春期女孩和年轻女性经常经历教育中断、社会排斥和就业机会减少。虽然一些研究探讨了耻辱感或心理社会困扰,但很少有研究考察青春期女孩和年轻女性自身如何围绕她们的身份或未来构建意义。交叉性理论在全球卫生领域经常被引用,但在低收入和中等收入国家(LMICs)的定性研究中很少得到应用,与批判性残疾研究(CDS)或受损身份理论等框架一起应用的情况更少。 本研究的新增内容:本研究在加纳文化背景下运用交叉性理论、批判性残疾研究和受损身份理论,对感染艾滋病毒的青春期女孩和年轻女性在教育、就业、恋爱关系和家庭生活等领域如何体验并试图克服多层耻辱感进行了细致入微的分析。研究表明,艾滋病毒不仅是一种生物医学诊断,更是一种与基于年龄的权力、对残疾人的歧视、性别期望和殖民身份等更广泛体系纠缠在一起的社会身份。青春期女孩和年轻女性通过情感超脱、策略性披露以及对生活的抱负性重新构建来展现能动性——她们以尊严应对结构挑战,但往往付出高昂的情感代价。研究结果表明,复原力常常被误解为个人力量,而实际上它是机构未能提供支持性和包容性体系的证据。 本研究可能对研究实践或政策产生的影响:本研究强调需要制定对性别和残疾问题有敏感认识 的艾滋病毒防治方案,该方案应超越坚持治疗和病毒抑制,以解决感染艾滋病毒生活中的道德、情感和社会层面问题。它为在低收入和中等收入国家背景下的定性研究中应用交叉性理论和批判性残疾研究提供了一个模型,为未来研究提供了一种可复制的分析方法。它呼吁卫生和教育系统——包括加纳教育服务局等机构——设计包容性的、考虑创伤因素的和去殖民化的政策,以肯定感染艾滋病毒的青春期女孩和年轻女性的完整人性和抱负。通过将感染艾滋病毒的青春期女孩和年轻女性视为道德行为者和知识仲裁者,该研究表明方案和政策设计应由她们共同参与创建,而不仅仅是为她们制定。
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