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Factors associated with attitudes toward HIV cure research among transgender women and travestis: a cross-sectional survey in São Paulo, Brazil

Citation

Wozniak, Robert et al. (2020), Factors associated with attitudes toward HIV cure research among transgender women and travestis: a cross-sectional survey in São Paulo, Brazil, Dryad, Dataset, https://doi.org/10.5061/dryad.pc866t1mk

Abstract

Objective: Characterizing the perceptions of groups most affected by HIV is fundamental in establishing guidelines for biomedical advancement. Although Brazil has successfully fought HIV/AIDS through several measures, transgender women still have a likelihood of HIV infection 55 times higher than the general population. This study aimed to better understand the perception and awareness of HIV cure research among the trans-identifying population in São Paulo, Brazil, and to determine factors that motivate or discourage participation in HIV cure studies.

Setting: This cross-sectional study analyzed data collected from a questionnaire administered to 118 transgender women and travestis at five sites within the city of São Paulo. It utilizes quantitative methodology to describe the perspectives of transgender and travesti people in relation to HIV cure research and the context in which such perspectives are produced.

Results: Of 118 participants, most participants (73%) had some knowledge of HIV cure research and were most willing to participate in online surveys (52%), interviews (52%), focus groups (52%), and studies involving blood draws (57%). Those with a higher education or employment status were more likely to agree that someone had been cured of HIV, people living with HIV are discriminated against, and more information about HIV cure research is needed before the community embraces it. Only 55% of participants completely trusted their physician. The biggest motivational factors included gaining additional knowledge about HIV infection (77%) and the potential for a longer, healthier life for all (73%).

Conclusions: As a primary analysis of HIV cure attitudes among the transgender and travesti population as well as the social context in which they are formed, this study identifies opportunities to strengthen the dialogue and develop more educational collaborations between scientific investigators, community educators, and the trans-identifying population to ensure that HIV cure research is inclusive of diverse perspectives.

Methods

This study analyzes data collected from a questionnaire administered at five sites within the city of São Paulo, Brazil. It is a cross-regional study that utilizes quantitative methodology to describe the perspectives of transgender and travesti people in relation to HIV cure research and the context in which such perspectives are produced. A convenience sample of 118 individuals was obtained from July 5, 2019 to August 15, 2019. To obtain the desired sample size, convenience sampling was utilized by approaching transgender or travesti-identifying individuals seeking health services, social services, or communal living spaces at the designated study sites. Inclusion criteria for the study consisted of being 18 years of age or more, being a resident of the state of São Paulo, self-identification as a transgender woman or travesti, and attendance at a study site. To limit potential sampling bias and obtain a more regionally representative sample, the study was conducted in five sites where transgender women and travestis assembled for social and supportive activities. After consenting, the questionnaires were completed and collected, with the responses recorded on a secure online database (REDCap).

The self-administered paper questionnaire measured demographic factors, HIV awareness, attitudes to HIV cure research, past participation in HIV research studies, and willingness to participate in HIV cure studies. This study had four main outcomes: (1) willingness to participate in various forms of HIV cure research, (2) factors which could motivate participation in HIV cure research, (3) factors which could discourage participation in HIV cure research, and (4) general attitudes toward HIV and HIV cure research. A modified Likert Scale was utilized to determine participants’ level of agreement with specific statements or aspects of research studies.

As the questionnaire indicates,(supplementary file) demographic variables included self-reported age, skin color/race, site location, sexual orientation, gender identity, level of education, employment status, health status, and HIV status.

Knowledge and perceptions about HIV cure were measured by asking participants if they had heard of HIV/AIDS cure research and what an HIV cure mean to them, with the possible options being: “No more HIV treatment needed temporarily”; “No more HIV treatment needed ever”; “No risk of transmitting HIV to others”; “Negative HIV test”; “HIV completely eliminated from the body”; “There is no risk of HIV/AIDS-related complications or other effects of HIV”; or “Other”. To determine whether general knowledge of news surrounding HIV cure had been assimilated by the associated population, we asked participants if they thought someone had been cured of HIV as well as how many years it would take to make an HIV cure that is available to the public.

To evaluate previous involvement in general health studies, participants were asked to report any participation in research involving online questionnaires, HIV prevention surveys, interviews, focus group discussions, and long-term studies. They were also asked about involvement in studies that included blood draws, HIV prevention medications, behavioral treatments, new treatments or approaches, and drug safety.

To assess participant preferences regarding their potential involvement in HIV cure research, they were asked if they would be willing to participate in studies involving online questionnaires, in-person or phone interviews, focus group discussions, blood draws, tissue biopsies, leukapheresis or apheresis, latency reversing agents, gene editing, autologous or allogenic transplants, therapeutic vaccines, treatment interruption, broadly neutralizing antibodies, unique proteins or T cells, new treatments untested on people, early safety studies, and efficacy studies.

The subsequent portion of the questionnaire evaluated factors that would motivate participants to engage in HIV cure research. Participants were asked to indicate the level of importance for each of the following factors: gaining additional knowledge about HIV, having access to medical doctors, researchers, or nurses, contributing to HIV cure research, hope for health improvement, payment for participation, care for the community, information about new treatment options, free laboratory work, free meals at the study site, money for transportation, care for future generations, contributions to scientific knowledge, the potential for a longer and healthier life for themself, and the potential for a longer and healthier life for others.

To understand potential study risks that would discourage participation in HIV cure research, participants were asked whether various factors would dissuade them from engaging in research studies. These included toxicities or adverse side effects, the potential of drug resistance development, the potential of an increased viral load to do ART interruption, the activation of cancer-causing genes, graft-versus-host disease, invasive study procedures, long study visits, long-term follow-up, neurologic side effects, gastrointestinal side effects, psychological side effects, HIV-related side effects, dermatologic side effects, musculoskeletal side effects, allergic reactions, reproductive side effects, potential HIV transmission, unknown side effects, pain or discomfort, overnight hospital stays, and taking time away from family or work.

Finally, general attitudes toward HIV cure research were assessed by asking participants their level of agreement with various statements regarding the impact of cost on a potential HIV cure, the potential dangers of a new cure, whether a cure is actually needed, the use of STI prevention methods if an HIV cure were available, the need for more HIV cure research education, and whether they believed there would ever be a cure for HIV. Participants were also asked about discrimination against people living with HIV and their level of trust for their health care provider.

All technical terms used in the questionnaire were accompanied by brief definitions and/or examples in layman’s terms to improve participant comprehension.

For data entry and database construction, REDCap (version 6.5.0) was used. A univariate analysis was performed to determine the association between demographic variables, perceptions, and willingness to undergo different types of cure research studies using chi squared tests or Fisher exact tests for categorical variables as well as Wilcoxon Rank-Sum tests for numeric variables. A univariate analysis was also performed on the association between demographic variables and “Missing/Do Not Understand” responses in order to explore the characteristics of participants who failed to provide valid answers. For all comparisons, 2-tailed p-values<0.05 were considered statistically significant. All analyses were performed in Stata Version 15.1 (StataCorp; StataCorp LP, College Station, TX).

Usage Notes

We direct all readers and data users to first utilize the README file (Wozniak-2020-Sao-Paulo-Transgender-Survey-README-File.txt), which provides an overview of the study and the information within each file submitted to Dryad.
 
Wozniak-2020-Sao-Paolo-Transgender-Survey-Tables-I-XIII-Excel.xlsx provides all data tables in Excel format for ease of the reader or data user.
Data from each specific table can be found in .csv format for documents beginning with "Wozniak-Table" for Tables I-XIII.
Wozniak-2020-Sao-Paulo-Transgender-Survey-English-Version.txt provides the English version of the survey distributed in the study.

Funding

National Institute of Allergy and Infectious Diseases, Award: UM1AI126617

NIH NIAID, Award: T32AI007613

District of Columbia Center for AIDS Research, Award: AI117970

NIH NIAID, Award: T32AI007613

District of Columbia Center for AIDS Research, Award: AI117970