‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USA

Objectives Transgender women (TW) are highly burdened by HIV infection in the USA. Research is needed into drivers of the HIV epidemic for TW, including longitudinal studies to identify risks for incident HIV infection and optimal intervention targets. This formative research sought to understand TW...

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Main Authors: Erin Cooney, Andrea L Wirtz, Sari L Reisner, Aeysha Chaudhry, Henri Garrison-Desany, Elisa Juarez-Chavez
Format: Article
Language:English
Published: BMJ Publishing Group 2020-01-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/10/1/e029852.full
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author Erin Cooney
Andrea L Wirtz
Sari L Reisner
Aeysha Chaudhry
Henri Garrison-Desany
Elisa Juarez-Chavez
author_facet Erin Cooney
Andrea L Wirtz
Sari L Reisner
Aeysha Chaudhry
Henri Garrison-Desany
Elisa Juarez-Chavez
author_sort Erin Cooney
collection DOAJ
description Objectives Transgender women (TW) are highly burdened by HIV infection in the USA. Research is needed into drivers of the HIV epidemic for TW, including longitudinal studies to identify risks for incident HIV infection and optimal intervention targets. This formative research sought to understand TW’s experiences with, perceptions of and barriers and facilitators to HIV research participation to inform future research implementation.Design Between August 2017 and January 2018, five online synchronous computer-mediated focus groups were conducted in English and two in Spanish. Recruitment used a mixed format of technology, such as geotargeted social media, and non-technology infused methods, such as peer referrals. Maximum variation sampling was used to enrol participants across a wide range of characteristics. Qualitative codes were iteratively developed and applied to focus group discussion transcripts by independent analysts.Setting Participants were recruited from Atlanta, Baltimore, Boston, Miami, New York City and Washington D.C.Participants Participants identified as TW≥18 years and resided in one of the six metropolitan areas or outlying regions. 33 participants elected to partake in English focus groups and eight participated in Spanish-led groups.Results The geographically diverse sample had a mean age of 41.1 years (SD=13.6), and 34% identified as Black African American and 29% as Hispanic/Latina. Social and economic factors were found to shape HIV research participation for TW. Barriers to HIV research participation included limited research opportunities, mistrust, fear of mistreatment, safety and confidentiality, competing priorities and HIV stigma. Facilitators to HIV research participation were peer involvement and engagement, monetary and non-monetary incentives, flexibility and choices, multiple modalities and methods, and transcenteredness.Conclusion It is critical to address the social and economic vulnerabilities surrounding HIV research participation for TW. Results from this study can inform the design and implementation of gender-affirming and culturally tailored approaches to HIV research with TW.
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spelling doaj-art-184397d98b2549579a7b64dc6e1f7b5e2024-12-07T01:25:08ZengBMJ Publishing GroupBMJ Open2044-60552020-01-0110110.1136/bmjopen-2019-029852‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USAErin Cooney0Andrea L Wirtz1Sari L Reisner2Aeysha Chaudhry3Henri Garrison-Desany4Elisa Juarez-Chavez5Epidemiology, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, USACenter for Public Health and Human Rights, Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA3 Department of Epidemiology, The Fenway Institute at Fenway Health, Boston, Massachusetts, USAGeneral Pediatrics, Boston Children`s Hospital, Boston, Massachusetts, USAEpidemiology, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, USACentro de Promoción y Defensa de los Derechos Sexuales y Reproductivos, Lima, PeruObjectives Transgender women (TW) are highly burdened by HIV infection in the USA. Research is needed into drivers of the HIV epidemic for TW, including longitudinal studies to identify risks for incident HIV infection and optimal intervention targets. This formative research sought to understand TW’s experiences with, perceptions of and barriers and facilitators to HIV research participation to inform future research implementation.Design Between August 2017 and January 2018, five online synchronous computer-mediated focus groups were conducted in English and two in Spanish. Recruitment used a mixed format of technology, such as geotargeted social media, and non-technology infused methods, such as peer referrals. Maximum variation sampling was used to enrol participants across a wide range of characteristics. Qualitative codes were iteratively developed and applied to focus group discussion transcripts by independent analysts.Setting Participants were recruited from Atlanta, Baltimore, Boston, Miami, New York City and Washington D.C.Participants Participants identified as TW≥18 years and resided in one of the six metropolitan areas or outlying regions. 33 participants elected to partake in English focus groups and eight participated in Spanish-led groups.Results The geographically diverse sample had a mean age of 41.1 years (SD=13.6), and 34% identified as Black African American and 29% as Hispanic/Latina. Social and economic factors were found to shape HIV research participation for TW. Barriers to HIV research participation included limited research opportunities, mistrust, fear of mistreatment, safety and confidentiality, competing priorities and HIV stigma. Facilitators to HIV research participation were peer involvement and engagement, monetary and non-monetary incentives, flexibility and choices, multiple modalities and methods, and transcenteredness.Conclusion It is critical to address the social and economic vulnerabilities surrounding HIV research participation for TW. Results from this study can inform the design and implementation of gender-affirming and culturally tailored approaches to HIV research with TW.https://bmjopen.bmj.com/content/10/1/e029852.full
spellingShingle Erin Cooney
Andrea L Wirtz
Sari L Reisner
Aeysha Chaudhry
Henri Garrison-Desany
Elisa Juarez-Chavez
‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USA
BMJ Open
title ‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USA
title_full ‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USA
title_fullStr ‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USA
title_full_unstemmed ‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USA
title_short ‘It all dials back to safety’: A qualitative study of social and economic vulnerabilities among transgender women participating in HIV research in the USA
title_sort it all dials back to safety a qualitative study of social and economic vulnerabilities among transgender women participating in hiv research in the usa
url https://bmjopen.bmj.com/content/10/1/e029852.full
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