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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.

Publication ,  Journal Article
Hosaka, KRJ; Mandewo, D; Mmbaga, BT; Ngowi, H; Dow, DE; Stewart, KA; Sanaa ya Vijana Youth Collaborative,
Published in: Med Humanit
September 2023

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.

Duke Scholars

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Published In

Med Humanit

DOI

EISSN

1473-4265

Publication Date

September 2023

Volume

49

Issue

3

Start / End Page

396 / 406

Location

United States

Related Subject Headings

  • Tanzania
  • Social Stigma
  • Humans
  • HIV Infections
  • General Arts, Humanities & Social Sciences
  • Adolescent
  • 5002 History and philosophy of specific fields
  • 5001 Applied ethics
  • 2202 History and Philosophy of Specific Fields
  • 2201 Applied Ethics
 

Citation

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Hosaka, K. R. J., Mandewo, D., Mmbaga, B. T., Ngowi, H., Dow, D. E., Stewart, K. A., & Sanaa ya Vijana Youth Collaborative, . (2023). "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. Med Humanit, 49(3), 396–406. https://doi.org/10.1136/medhum-2022-012477
Hosaka, Kalei Richard James, Diana Mandewo, Blandina T. Mmbaga, Happyness Ngowi, Dorothy E. Dow, Kearsley Alison Stewart, and Kearsley Alison Sanaa ya Vijana Youth Collaborative. “"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.Med Humanit 49, no. 3 (September 2023): 396–406. https://doi.org/10.1136/medhum-2022-012477.
Hosaka KRJ, Mandewo D, Mmbaga BT, Ngowi H, Dow DE, Stewart KA, et al. "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. Med Humanit. 2023 Sep;49(3):396–406.
Hosaka, Kalei Richard James, et al. “"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.Med Humanit, vol. 49, no. 3, Sept. 2023, pp. 396–406. Pubmed, doi:10.1136/medhum-2022-012477.
Hosaka KRJ, Mandewo D, Mmbaga BT, Ngowi H, Dow DE, Stewart KA, Sanaa ya Vijana Youth Collaborative. "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. Med Humanit. 2023 Sep;49(3):396–406.

Published In

Med Humanit

DOI

EISSN

1473-4265

Publication Date

September 2023

Volume

49

Issue

3

Start / End Page

396 / 406

Location

United States

Related Subject Headings

  • Tanzania
  • Social Stigma
  • Humans
  • HIV Infections
  • General Arts, Humanities & Social Sciences
  • Adolescent
  • 5002 History and philosophy of specific fields
  • 5001 Applied ethics
  • 2202 History and Philosophy of Specific Fields
  • 2201 Applied Ethics