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Qualitative study develops a model explaining how PLHIV transition to sustained advocacy roles, suggesting new approaches for support.
Advocacy led by people living with HIV (PLHIV) is increasingly recognized as vital for reducing stigma, strengthening psychosocial support, and improving engagement in HIV care. Despite evidence of its effectiveness, little is known about how PLHIV transition from diagnosis to sustained advocacy roles. This study addressed that gap by developing a theory of peer leadership emergence. Using Charmaz′s constructivist grounded theory, semi-structured interviews were conducted with 27 PLHIV advocates in Metro Manila. Data were analyzed through iterative coding, constant comparison, reflexive memoing, and member checking. Interviews conducted in Filipino were translated and back-translated to ensure conceptual accuracy. The resulting Purpose-Born Advocacy model identifies five recursive phases: (1) Diagnosis as Disruption, (2) Encountering Mirrors, (3) Reconstructing the Self, (4) Living the Mission, and (5) The Cost of Caring. The model shows how PLHIV transform experiences of stigma, trauma, and relational turning points into purpose-druven advocacy while illustrating how emotional labor and burnout can trigger renewed cycles of connection and meaning-making. This study provides a theory of how PLHIV develop, sustain, and renew advocacy identities and offers guidance for strengthening peer-led HIV responses through trauma-informed systems, wellness supports, and formal integration of lived experience leadership into HIV care, community programs, and policy.
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Ramos et al. (2026) studied this question.
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