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Barriers and Facilitators to Engagement and Retention in Care among Transgender Women Living with Human Immunodeficiency Virus

  • Original Article
  • Published:
Annals of Behavioral Medicine

Abstract

Background

Transgender women have 49 times the odds of human immunodeficiency virus (HIV) infection compared to other groups, yet they are disproportionately underserved by current treatment efforts.

Purpose

This study aimed to examine culturally unique barriers and facilitators to engagement and retention in HIV care and strengthen efforts to mitigate health disparities, guided by the Models of Gender Affirmation and Health Care Empowerment.

Methods

Through 20 interviews and five focus groups (n = 38), transgender women living with HIV discussed their experiences and life contexts of engagement in and adherence to HIV care and treatment.

Results

Our participants faced substantial challenges to adhering to HIV care and treatment, including avoidance of healthcare due to stigma and past negative experiences, prioritization of hormone therapy, and concerns about adverse interactions between antiretroviral treatment for HIV and hormone therapy. Receiving culturally competent, transgender-sensitive healthcare was a powerful facilitator of healthcare empowerment.

Conclusions

Recommendations are offered to inform intervention research and guide providers, emphasizing gender affirming HIV care that integrates transition-related healthcare needs.

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Acknowledgments

This research was supported by an IDEA award (ID10-SF-040) from the California HIV/AIDS Research Program, by the San Francisco HIV Health Services Planning Council, and by grants K08MH085566 and K24MH087220 from the National Institute of Mental Health.

The authors would like to acknowledge the following individuals and groups for their contributions: Michael Scarce, Mark Molnar, Danielle Castro, Angel Ventura, Pierre-Cedric Crouch, the San Francisco HIV Health Services Planning Council Transgender Women's Working Group, the Shanti Project, and the transgender women who participated in this study by courageously sharing their thoughts and experiences.

Conflict of Interest

The authors have no conflict of interest to disclose.

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Authors and Affiliations

  1. Department of Medicine, University of California, San Francisco, San Francisco, CA, USA

    Jae M. Sevelius Ph.D., Enzo Patouhas M.A. & Mallory O. Johnson Ph.D.

  2. Department of Family and Community Medicine, University of California, San Francisco, San Francisco, CA, USA

    JoAnne G. Keatley M.S.W.

  3. Center of Excellence for Transgender Health, Center for AIDS Prevention Studies, University of California, San Francisco, San Francisco, CA, 94105, USA

    Jae M. Sevelius Ph.D., Enzo Patouhas M.A. & JoAnne G. Keatley M.S.W.

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  1. Jae M. Sevelius Ph.D.
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Correspondence to Jae M. Sevelius Ph.D..

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Sevelius, J.M., Patouhas, E., Keatley, J.G. et al. Barriers and Facilitators to Engagement and Retention in Care among Transgender Women Living with Human Immunodeficiency Virus. ann. behav. med. 47, 5–16 (2014). https://doi.org/10.1007/s12160-013-9565-8

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  • DOI: https://doi.org/10.1007/s12160-013-9565-8

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