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“I am not alone with tears”: embodying stigma and longing among youth living with perinatally acquired HIV in Tanzania through a collaborative arts-based approach


It is estimated that 4 million youth aged 15–24 years live with HIV globally, 85% of whom live in sub-Saharan Africa. For youth living with perinatally acquired HIV (YPHIV), stigma is frequently linked with negative health outcomes. YPHIV face distinct HIV stigma experiences across the lifespan, particularly because of the centrality of the family context in their HIV experience and the reality that they have lived with HIV since birth. Nevertheless, our understanding and measurement of stigma remains limited. One way to improve our understanding of HIV stigma for YPHIV is through in-depth exploration of embodied narratives of HIV experience. This paper is based on fieldwork that incorporated a collaborative arts-based approach with a group of six YPHIV in Tanzania. Using artwork and a theoretical framework of embodiment, this paper phenomenologically describes their narratives of HIV experience, perceptions of stigma over time and imaginations of the future. This paper highlights that collective solidarity, habitus and participants’ desire to reframe others’ perceptions about them and relieve the suffering of others shape the embodied experience with HIV. Moreover, this paper argues that stigma experiences for YPHIV are temporal and have changed over time with increased age, interventions and biomedical advances. Broadly, while HIV stigma continues to exist, participants report responding to stigma with agency by creating alternative solidarities and pushing boundaries of possibility, reframing others’ perceptions of them and acting on dreams for better futures.

  • arts in health/arts and health
  • medical humanities
  • narrative medicine

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