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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
  1. Kalei Richard James Hosaka1,2,
  2. Diana Mandewo3,
  3. Blandina T Mmbaga4,5,
  4. Happyness Ngowi4,
  5. Dorothy E Dow6,7,
  6. Kearsley Alison Stewart6,8
  7. on behalf of the Sanaa ya Vijana Youth Collaborative
  1. 1John A. Burns School of Medicine, University of Hawai'i at Manoa, Honolulu, Hawaii, USA
  2. 2Division of Internal Medicine-Pediatrics, University of California Los Angeles David Geffen School of Medicine, Los Angeles, California, USA
  3. 3Parirenyatwa Group of Hospitals, Harare, Zimbabwe
  4. 4Kilimanjaro Christian Medical Centre, Moshi, Kilimanjaro, United Republic of Tanzania
  5. 5Kilimanjaro Christian Medical University College, Moshi, Kilimanjaro, United Republic of Tanzania
  6. 6Duke Global Health Institute, Durham, North Carolina, USA
  7. 7Division of Infectious Diseases, Department of Pediatrics, Duke University Medical Center, Durham, North Carolina, USA
  8. 8Department of Cultural Anthropology, Duke University, Durham, North Carolina, USA
  1. Correspondence to Dr Kalei Richard James Hosaka, Division of Internal Medicine-Pediatrics, University of California, Los Angeles, Los Angeles, CA, USA; kaleirh{at}hawaii.edu

Abstract

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
  • HIV/AIDS
  • medical humanities
  • narrative medicine

Data availability statement

Data are available on reasonable request.

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Data availability statement

Data are available on reasonable request.

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Footnotes

  • DED and KAS are joint senior authors.

  • DED and KAS contributed equally.

  • Collaborators Sanaa ya Vijana youth collaborative. The Sanaa ya Vijana youth collaborative refers to the youth participants and recognises their distinct artistic contribution to this manuscript. Individuals preferred not to be individually named; instead, they preferred to be recognised collectively.

  • Contributors KRJH drafted the initial manuscript. All authors were involved in design of the study. KRJH, DM and HN facilitated data collection; all authors interpreted data. All authors critically reviewed and edited the final version of the manuscript. DED is the guarantor for this study; DED and KAS contributed equally to this paper as senior authors.

  • Funding This work was supported by the Fogarty International Center and the National Institute of Child Health and Human Development (NICHD) of the National Institutes of Health (D43 TW009337), an International Research Scientist Development Award funded by the Fogarty International Center and the National Institute of Mental Health (K01 TW-009985), and the Center for AIDS Research (CFAR), Duke University (NIH: P30A1064518).

  • Disclaimer The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the 'Methods' section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.