The world according to girls: a qualitative study of school, work and identity among adolescent girls and young women living with HIV in Ghana

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ABSTRACT 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.

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