Transgender and Other Gender-Diverse Youth's Progression Through the HIV Continuum of Care: Socioecological System Barriers

AIDS Patient Care STDS. 2019 Jan;33(1):32-43. doi: 10.1089/apc.2018.0078.


Transgender and other gender-diverse youth (TGDY) are disproportionately affected by HIV and in need of developmentally and culturally appropriate services as they progress along the HIV continuum of care (CoC). We conducted a phenomenological analysis of 66 in-depth interviews with TGDY living with HIV (ages 16-24) from 14 cities across the United States about their experiences within the different stages of the HIV CoC. TGDY described experiencing a wide variety of barriers across each examined stage of the HIV CoC, including HIV testing, linkage to care, retention in care, initiation of antiretroviral therapy, and adherence to antiretroviral therapy. Within these CoC stages, TGDY experienced barriers to care across all socioecological systems, including the sociocultural systems, clinic/organizational systems, and interpersonal systems. Barrier themes remained relatively constant for all stages of the CoC, although the way each thematic category of barrier (e.g., the theme of societal oppression and discrimination within the sociocultural level) was experienced varied by stage. Although overall thematic categories were typically not focused solely on threats to participants' gender identity and expression, specific descriptions of the nature of the thematic barriers were related to gender identity and gender expression. Implications of the findings for future research and practice are discussed.

Keywords: HIV continuum of care; qualitative; socioecological; transgender; youth.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adolescent
  • Attitude of Health Personnel*
  • Continuity of Patient Care*
  • Discrimination, Psychological
  • Female
  • HIV Infections / diagnosis
  • HIV Infections / drug therapy*
  • HIV Infections / ethnology
  • HIV Infections / psychology
  • Health Services Accessibility*
  • Humans
  • Interviews as Topic
  • Male
  • Mass Screening
  • Patient Navigation*
  • Qualitative Research
  • Social Stigma*
  • Transgender Persons / psychology*
  • United States
  • Young Adult