HIV prevention and HIV care among transgender and gender diverse youth: design and implementation of a multisite mixed-methods study protocol in the U.S

Laura Jadwin-Cakmak, Sari L Reisner, Jaclyn M W Hughto, Liz Salomon, Miguel Martinez, Elliot Popoff, Bré Anne Rivera, Gary W Harper, Laura Jadwin-Cakmak, Sari L Reisner, Jaclyn M W Hughto, Liz Salomon, Miguel Martinez, Elliot Popoff, Bré Anne Rivera, Gary W Harper

Abstract

Background: In the U.S., transgender and gender diverse (TGD) populations face structural, interpersonal, and individual barriers to healthcare. Less is known, however, about the HIV prevention and treatment experiences of TGD youth in the U.S. The current study was developed to fill this research gap.

Methods: This article describes the research protocol for a multi-site, U.S.-based mixed-methods study that sought to identify the multi-level facilitators and barriers that influence participation of TGD youth in various stages of the HIV prevention (e.g., pre-exposure prophylaxis uptake) and care continua. A sample of diverse TGD youth ages 16-24 was recruited from 14 U.S. sites. TGD youth participants completed a one-time, in-person visit that included an informed consent process, computer-based quantitative survey, and in-depth qualitative interview assessing experiences accessing HIV prevention and/or care services. Providers serving TGD youth were recruited from the same 14 sites and completed a one-time visit via phone that included informed consent, demographic questionnaire, and in-depth qualitative interview assessing their experiences providing HIV prevention or treatment services to TGD youth.

Results: Overall, 186 TGD youth ages 16-24 and 59 providers serving TGD youth were recruited and enrolled from across the 14 U.S. sites. TGD youth participants had a mean age of 20.69; 77.3% youth of color; 59.7% trans-feminine; 15.5% trans-masculine; 24.9% non-binary; 53.6% family income under poverty level. Providers included medical and mental health providers as well as case manager/care coordinators, HIV test counselors, and health educators/outreach workers. Providers were 81.3% cisgender and 30.5% people of color. Successes with community-engagement strategies and gender-affirming research methods are reported.

Conclusions: This study addresses critical gaps in current knowledge about the HIV prevention and care experiences of TGD youth. Findings have implications for the development of HIV interventions across levels to support the health and well-being of TGD youth. Future research is warranted to replicate and expand on lessons learned regarding recruitment and engagement of communities of TGD youth, including longitudinal designs to assess engagement across their developmental stages. Lessons learned working with TGD youth through developing and implementing the study protocol are shared.

Trial registration: Registered on ClinicalTrials.gov on 05/20/2015 (NCT02449629).

Keywords: Adolescent; HIV care continuum; HIV prevention; Mixed methods; Transgender; Young adult.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Socioecological Levels Visual Aid; Description: This figure, a graphic developed by our research team with feedback from the study Youth Advisory Board used as a visual aid during the in-depth interviews with TGD youth

References

    1. Bauermeister JA, Goldenberg T, Connochie D, Jadwin-Cakmak L, Stephenson R. Psychosocial disparities among racial/ethnic minority transgender young adults and young men who have sex with men living in Detroit. Transgend Health. 2016;1(1):279–290. doi: 10.1089/trgh.2016.0027.
    1. Garofalo R, Deleon J, Osmer E, Doll M, Harper GW. Overlooked, misunderstood and at-risk: exploring the lives and HIV risk of ethnic minority male-to-female transgender youth. J Adolesc Health. 2006;38(3):230–236. doi: 10.1016/j.jadohealth.2005.03.023.
    1. Liu RT, Mustanski B. Suicidal ideation and self-harm in lesbian, gay, bisexual, and transgender youth. Am J Prev Med. 2012;42(3):221–228. doi: 10.1016/j.amepre.2011.10.023.
    1. Reisner SL, Vetters R, Leclerc M, Zaslow S, Wolfrum S, Shumer D, Mimiaga MJ. Mental health of transgender youth in care at an adolescent urban community health center: a matched retrospective cohort study. J Adolesc Health. 2015;56(3):274–279. doi: 10.1016/j.jadohealth.2014.10.264.
    1. Rowe C, Santos GM, McFarland W, Wilson EC. Prevalence and correlates of substance use among trans female youth ages 16-24 years in the San Francisco Bay Area. Drug Alcohol Depend. 2015;147:160–166. doi: 10.1016/j.drugalcdep.2014.11.023.
    1. James SE, Herman JL, Rankin S, Keisling M, Mottet L, Anafi M. The report of the 2015 U.S. transgender survey. In. Washington, DC: National Center for Transgender Equality; 2016.
    1. Centers for Disease Control and Prevention Division of HIV/AIDS Prevention. HIV Among Transgender People. . Accessed 1 July 2018.
    1. Walker T, Wang G, Seth P, Hollis N, Figueroa A, Belcher L. Centers for disease control and prevention. 2015. CDC-funded HIV testing: United States, Puerto Rico, and the U.S. Virgin Islands.
    1. Herbst JH, Jacobs ED, Finlayson TJ, McKleroy VS, Neumann MS, Crepaz N. Estimating HIV prevalence and risk behaviors of transgender persons in the United States: a systematic review. AIDS Behav. 2008;12(1):1–17. doi: 10.1007/s10461-007-9299-3.
    1. Fisher CB, Fried AL, Desmond M, Macapagal K, Mustanski B. Perceived barriers to HIV prevention Services for Transgender Youth. LGBT Health. 2018;5(6):350–358. doi: 10.1089/lgbt.2017.0098.
    1. Rowniak S, Chesla C, Rose CD, Holzemer WL. Transmen: the HIV risk of gay identity. AIDS Educ Prev. 2011;23(6):508–520. doi: 10.1521/aeap.2011.23.6.508.
    1. Reisner SL, Perkovich B, Mimiaga MJ. A mixed methods study of the sexual health needs of New England transmen who have sex with nontransgender men. AIDS Patient Care STDs. 2010;24(8):501–513. doi: 10.1089/apc.2010.0059.
    1. Reisner SL, White JM, Mayer KH, Mimiaga MJ. Sexual risk behaviors and psychosocial health concerns of female-to-male transgender men screening for STDs at an urban community health center. AIDS Care. 2014;26(7):857–864. doi: 10.1080/09540121.2013.855701.
    1. Roberts AL, Rosario M, Slopen N, Calzo JP, Austin SB. Childhood gender nonconformity, bullying victimization, and depressive symptoms across adolescence and early adulthood: an 11-year longitudinal study. J Am Acad Child Adolesc Psychiatry. 2013;52(2):143–152. doi: 10.1016/j.jaac.2012.11.006.
    1. Lall P, Lim SH, Khairuddin N, Kamarulzaman A. Review: an urgent need for research on factors impacting adherence to and retention in care among HIV-positive youth and adolescents from key populations. J Int AIDS Soc. 2015;18(2 Suppl 1):19393.
    1. Dowshen N, Matone M, Luan X, Lee S, Belzer M, Fernandez MI, Rubin D. Behavioral and health outcomes for HIV+ young transgender women (YTW) linked to and engaged in medical care. LGBT Health. 2016;3(2):162–167. doi: 10.1089/lgbt.2014.0062.
    1. Bronfenbrenner U. The ecology of human development: experiments by nature and design. 1979.
    1. Bronfenbrenner U. Examining lives in context: perspectives on the ecology of human development. Washington DC: American Psychological Association; 1995. Developmental ecology through space and time: a future perspective; pp. 619–647.
    1. White Hughto JM, Reisner SL, Pachankis JE. Transgender stigma and health: a critical review of stigma determinants, mechanisms, and interventions. Soc Sci Med. 2015;147:222–231. doi: 10.1016/j.socscimed.2015.11.010.
    1. Hendricks ML, Testa RJ. A conceptual framework for clinical work with transgender and gender nonconforming clients: an adaptation of the minority stress model. Prof Psychol Res Pract. 2012;43(5):460–467. doi: 10.1037/a0029597.
    1. Reisner SL, Greytak EA, Parsons JT, Ybarra ML. Gender minority social stress in adolescence: disparities in adolescent bullying and substance use by gender identity. J Sex Res. 2015;52(3):243–256. doi: 10.1080/00224499.2014.886321.
    1. Meyer IH. Minority stress and mental health in gay men. J Health Soc Behav. 1995;36(1):38–56. doi: 10.2307/2137286.
    1. Meyer IH. Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychol Bull. 2003;129(5):674–697. doi: 10.1037/0033-2909.129.5.674.
    1. Sevelius JM. Gender affirmation: a framework for conceptualizing risk behavior among transgender women of color. Sex Roles. 2012;68(11–12):675–689.
    1. Siskind RL, Andrasik M, Karuna ST, Broder GB, Collins C, Liu A, Lucas JP, Harper GW, Renzullo PO. Engaging transgender people in NIH-funded HIV/AIDS clinical trials research. J Acquir Immune Defic Syndr. 2016;72(Suppl 3):S243–S247. doi: 10.1097/QAI.0000000000001085.
    1. Creswell JW. Research design: qualitative, quantitative, and mixed methods approaches. Thousand Oaks: Sage Publications; 2003.
    1. Patton MQ. Qualitative research and evaluation methods. Thousand Oaks: Sage Publications; 2002.
    1. Plano Clark VL. Creswell JW: designing and conducting mixed methods research. Thousand Oaks: Sage Publications; 2011.
    1. Wilson EC, Garofalo R, Harris RD, Herrick A, Martinez M, Martinez J, Belzer M. Transgender female youth and sex work: HIV risk and a comparison of life factors related to engagement in sex work. AIDS Behav. 2009;13(5):902–913. doi: 10.1007/s10461-008-9508-8.
    1. Kahana SY, Fernandez MI, Wilson PA, Bauermeister JA, Lee S, Wilson CM, Hightow-Weidman LB. Rates and correlates of antiretroviral therapy use and virologic suppression among perinatally and behaviorally HIV-infected youth linked to care in the United States. J Acquir Immune Defic Syndr. 2015;68(2):169–177. doi: 10.1097/QAI.0000000000000408.
    1. Creswell JW. Qualitative inquiry and research design: choosing among five traditions. Thousand Oaks: Sage Publications; 2012.
    1. Israel BA, Krieger J, Vlahov D, Ciske S, Foley M, Fortin P, Guzman JR, Lichtenstein R, McGranaghan R, Palermo AG, et al. Challenges and facilitating factors in sustaining community-based participatory research partnerships: lessons learned from the Detroit, new York City and Seattle urban research centers. J Urban Health. 2006;83(6):1022–1040. doi: 10.1007/s11524-006-9110-1.
    1. Wallerstein NB, Duran B. Using community-based participatory research to address health disparities. Health Promot Pract. 2006;7(3):312–323. doi: 10.1177/1524839906289376.
    1. Reisner S, Keatley J, Baral S, Villayzan J, Mothopeng T, van der Merwe LL, Hosie A, Chung C. Transgender community voices: a participatory population perspective. Lancet. 2016;388(10042):327–330. doi: 10.1016/S0140-6736(16)30709-7.
    1. Grant JM, Mottet LA, Tanis J, Harrison J, Herman JL, Keisling M. Injustice at every turn: a report of the National Transgender Discrimination Survey. National Center for Transgender Equality and National Gay and Lesbian Task Force: Washington; 2011.
    1. Group G . In: Best practices for asking questions to identify transgender and other gender minority respondents on population-based surveys. Herman JL, editor. Los Angeles: The Williams Institute; 2014.
    1. Wylie SA, Corliss HL, Boulanger V, Prokop LA, Austin SB. Socially assigned gender nonconformity: a brief measure for use in surveillance and investigation of health disparities. Sex Roles. 2010;63(3–4):264–276. doi: 10.1007/s11199-010-9798-y.
    1. Reisner SL, M WJ, E DE, K H, J B, Cahill S, Team TPV . Discrimination and Health in Massachusetts: A Statewide Survey of Transgender and Gender Nonconforming Adults. Boston: The Fenway Institute, Fenway Health; 2014.
    1. Katz-Wise SL, Reisner SL, Hughto JW, Keo-Meier CL. Differences in sexual orientation diversity and sexual fluidity in attractions among gender minority adults in Massachusetts. J Sex Res. 2016;53(1):74–84. doi: 10.1080/00224499.2014.1003028.
    1. Hosek SG, Harper GW, Domanico R. Predictors of medication adherence among HIV-infected youth. Psychol Health Med. 2005;10(2):166–179. doi: 10.1080/1354350042000326584.
    1. Radloff LS. The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas. 1977;1(3):385–401. doi: 10.1177/014662167700100306.
    1. Spitzer RL, Kroenke K, Williams JB, Lowe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092–1097. doi: 10.1001/archinte.166.10.1092.
    1. Prins A, Ouimette P, Kimerling R, Cameron RP, Hugelshofer DS, Shaw-Hegwer J, Thrailkill A, Gusman FD, Sheikh JI. The primary care PTSD screen (PC-PTSD): development and operating characteristics. Prim Care Psychiatry. 2003;9(1):9–14. doi: 10.1185/135525703125002360.
    1. Xavier J, Honnold JA, Bradford J. The health, health-related needs, and life course experiences of transgender Virginians. Virginia Department of Health. 2007.
    1. Robins RW, Hendin HM, Trzesniewski KH. Measuring global self-esteem: construct validation of a single-item measure and the Rosenberg self-esteem scale. Personal Soc Psychol Bull. 2001;27(2):151–161. doi: 10.1177/0146167201272002.
    1. Knight JR, Sherritt L, Shrier LA, Harris SK, Chang G. Validity of the CRAFFT substance abuse screening test among adolescent clinic patients. Arch Pediatr Adolesc Med. 2002;156(6):607–614. doi: 10.1001/archpedi.156.6.607.
    1. ATN Behavioral Leadership Group Secondary Prevention Working Group . ATN-BLG Drugs/Alcohol and Sexual Activity Questionnaire. 2006.
    1. Mikolajczyk RT, Bredehorst M, Khelaifat N, Maier C, Maxwell AE. Correlates of depressive symptoms among Latino and non-Latino White adolescents: findings from the 2003 California health interview survey. BMC Public Health. 2007;7:21. doi: 10.1186/1471-2458-7-21.
    1. Dawson LH, Shih MC, de Moor C, Shrier L. Reasons why adolescents and young adults have sex: associations with psychological characteristics and sexual behavior. J Sex Res. 2008;45(3):225–232. doi: 10.1080/00224490801987457.
    1. Reisner SL, White Hughto JM, Gamarel KE, Keuroghlian AS, Mizock L, Pachankis JE. Discriminatory experiences associated with posttraumatic stress disorder symptoms among transgender adults. J Couns Psychol. 2016;63(5):509–519. doi: 10.1037/cou0000143.
    1. Williams DR, Yan Y, Jackson JS, Anderson NB. Racial differences in physical and mental health: socio-economic status, stress and discrimination. J Health Psychol. 1997;2(3):335–351. doi: 10.1177/135910539700200305.
    1. Hate crimes . Confronting violence against lesbians and gay men. Thousand Oaks: Sage Publications, Inc; 1992.
    1. Centers for Disease Control and Prevention . Behavioral risk factor surveillance system survey questionnaire. 2014.
    1. Roesch SC, Rowley AA, Vaughn AA. On the dimensionality of the stress-related growth scale: one, three, or seven factors? J Pers Assess. 2004;82(3):281–290. doi: 10.1207/s15327752jpa8203_04.
    1. Dedoose . 7.6.21 edn. Los Angeles: SocioCultural Research Consultants, LLC; 2018.
    1. Denzin NK. The research act: a theoretical introduction to sociological methods. New York: McGraw-Hill; 1977.
    1. Creswell JW, Plano Clark VL. Designing and conducting mixed methods research. 2. Los Angeles: SAGE Publications; 2011.
    1. Mason J. Mixing methods in a qualitatively driven way. Qual Res. 2006;6(1):9–25. doi: 10.1177/1468794106058866.
    1. Sevelius JM, Patouhas E, Keatley JG, Johnson MO. Barriers and facilitators to engagement and retention in care among transgender women living with human immunodeficiency virus. Ann Behav Med : a publication of the Society of Behavioral Medicine. 2013;47:5–16. doi: 10.1007/s12160-013-9565-8.
    1. Bauer GR, Hammond R, Travers R, Kaay M, Hohenadel KM, Boyce M. "I don't think this is theoretical; this is our lives": how erasure impacts health care for transgender people. J Assoc Nurses AIDS Care. 2009;20(5):348–361. doi: 10.1016/j.jana.2009.07.004.
    1. Roberts TK, Fantz CR. Barriers to quality health care for the transgender population. Clin Biochem. 2014;47(10–11):983–987. doi: 10.1016/j.clinbiochem.2014.02.009.
    1. Stephens SC, Bernstein KT, Philip SS. Male to female and female to male transgender persons have different sexual risk behaviors yet similar rates of STDs and HIV. AIDS Behav. 2011;15(3):683–686. doi: 10.1007/s10461-010-9773-1.
    1. Clements-Nolle K, Marx R, Guzman R, Katz M. HIV prevalence, risk behaviors, health care use, and mental health status of transgender persons: implications for public health intervention. Am J Public Health. 2001;91(6):915–921. doi: 10.2105/AJPH.91.6.915.
    1. Nuttbrock L, Hwahng S, Bockting W, Rosenblum A, Mason M, Macri M, Becker J. Lifetime risk factors for HIV/sexually transmitted infections among male-to-female transgender persons. J Acquir Immune Defic Syndr. 2009;52(3):417–421. doi: 10.1097/QAI.0b013e3181ab6ed8.
    1. Schulden JD, Song B, Barros A, Mares-DelGrasso A, Martin CW, Ramirez R, Smith LC, Wheeler DP, Oster AM, Sullivan PS, et al. Rapid HIV testing in transgender communities by community-based organizations in three cities. Public Health Rep. 2008;123(Suppl 3):101–114. doi: 10.1177/00333549081230S313.
    1. Le V, Arayasirikul S, Chen YH, Jin H, Wilson EC. Types of social support and parental acceptance among transfemale youth and their impact on mental health, sexual debut, history of sex work and condomless anal intercourse. J Int AIDS Soc. 2016;19(3 Suppl 2):20781.
    1. Sevelius JM, Carrico A, Johnson MO. Antiretroviral therapy adherence among transgender women living with HIV. J Assoc Nurses AIDS Care. 2010;21(3):256–264. doi: 10.1016/j.jana.2010.01.005.
    1. Nuttbrock L, Bockting W, Rosenblum A, Hwahng S, Mason M, Macri M, Becker J. Gender abuse, depressive symptoms, and HIV and other sexually transmitted infections among male-to-female transgender persons: a three-year prospective study. Am J Public Health. 2012;103(2):300–307. doi: 10.2105/AJPH.2011.300568.
    1. Remien RH, Bauman LJ, Mantell JE, Tsoi B, Lopez-Rios J, Chhabra R, DiCarlo A, Watnick D, Rivera A, Teitelman N, et al. Barriers and facilitators to engagement of vulnerable populations in HIV primary care in new York City. J Acquir Immune Defic Syndr. 2015;69(Suppl 1):S16–S24. doi: 10.1097/QAI.0000000000000577.
    1. Salazar LF, Crosby RA, Jones J, Kota K, Hill B, Masyn KE. Contextual, experiential, and behavioral risk factors associated with HIV status: a descriptive analysis of transgender women residing in Atlanta, Georgia. Int J STD AIDS. 2017;28(11):1059–1066. doi: 10.1177/0956462416686722.

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