Perceptions of Barriers to and Facilitators of Participation in Health Research Among Transgender People

Purpose: Although transgender people may be at increased risk for a range of health problems, they have been the subject of relatively little health research. An important step toward expanding the evidence base is to understand and address the reasons for nonparticipation and dropout. The aim of this study was to explore the perceptions of barriers to and facilitators of participation in health research among a sample of transgender people in San Francisco, CA, and Atlanta, GA. Methods: Twelve in-person focus groups (FGs) were conducted; six (three with transwomen, three with transmen) were conducted in San Francisco and six FGs were conducted in Atlanta (three with transwomen and three with transmen). FGs were audiorecorded, transcribed, and uploaded to MaxQDA software for analysis. A codebook was used to code transcripts; new codes were added iteratively as they arose. All transcripts were coded by at least 2 of the 4 researchers and, after each transcript was coded, the researchers met to discuss any discrepancies, which were resolved by consensus. Results: Among 67 FG participants, 37 (55%) identified as transmen and 30 (45%) identified as transwomen. The average age of participants was ?41 years (range 18?67) and the majority (61%) were non-Hispanic Whites. Several barriers that can hinder participation in health research were identified, including logistical concerns, issues related to mistrust, a lack of awareness about participation opportunities, and psychosocial/emotional concerns related to being ?outed.? A broad range of facilitators were also identified, including the opportunity to gain knowledge, access medical services, and contribute to the transgender community. Conclusion: These findings provide insights about the perceived barriers to and facilitators of research participation and offer some guidance for researchers in our ongoing effort to engage the transgender community in health research.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/140297/1/trgh.2016.0023.pd

Illuminating the Context and Circumstances of Male Couples Establishing a Sexual Agreement in Their Relationship

A sexual agreement is an explicit mutual understanding made between two partners about which sexual and relational behaviors they agree to engage in within and/or outside of their relationship. Factors that prompt male couples to form a sexual agreement and under what circumstances remain underinvestigated, yet are important considerations for development of couples-based sexual health and HIV prevention interventions. By using thematic analysis with qualitative dyadic data from a convenience sample of 29 HIV-negative male couples, the present study sought to describe the timing and investigate the context and circumstances that led male couples to establish a sexual agreement in their relationship at both the individual and couple levels, and by agreement type. Themes identified for when a sexual agreement was formed included within the first 6 months, and after 6 months in the relationship. Themes related to context and circumstances of couples' sexual agreement formation were as follows: (a) desire for sexual exploration, (b) arisen circumstances or events with other men, (c) influences from past relationship(s) and/or other couples (i.e., peers), (d) to protect against HIV, and (e) purposeful conversations versus understood. Findings suggest HIV prevention efforts should include skill-building exercises to help improve communication and promote sex positivity within male couples' relationships

Decisions About Testing for HIV While in a Relationship: Perspectives From an Urban, Convenience Sample of HIV-Negative Male Couples Who Have a Sexual Agreement

Many HIV-negative male couples establish a sexual agreement to help manage their HIV risk; however, less is known about their decisions about testing in this context. The present study examined whether male couples discussed HIV testing and explored their decisions about testing in the context of their sexual agreement at the individual- and couple-levels. Qualitative dyadic interview data were collected from 29 HIV-negative male couples with a sexual agreement who resided in Atlanta or Detroit; the sample was stratified by agreement type. Content analysis revealed male couples' decisions about HIV testing as routine, self-assurance, reliance and assumption on partner, beginning of relationship testers, and/or trust; decisions varied between partners and by agreement type. Findings suggest prevention efforts should help male couples integrate HIV testing into their sexual agreement that matches their agreement type and associated HIV-related risk behavior, and help shift their one-sided decisions about testing to a couple's mutually shared decision

HIV-negative male couples' attitudes about pre-exposure prophylaxis (PrEP) and using PrEP with a sexual agreement

One efficacious strategy to help prevent HIV is oral pre-exposure prophylaxis (PrEP), a daily regimen of antiretroviral treatment taken by HIV-negative individuals. Two of the recommendations of Centers for Disease Control and Prevention (CDC) guidelines for PrEP pertain to being in a relationship (i.e., male couples). Despite the recognition of how primary partners in male couples' relationships shape HIV risk and CDC's PrEP guidelines, there is a paucity of data that examine HIV-negative male couples' attitudes toward PrEP use and using PrEP with a sexual agreement. A sexual agreement is an explicit agreement made between two individuals about what sex and other related behaviors may occur within and outside of their relationship. In this qualitative study, we examine HIV-negative male couples' attitudes toward PrEP use and whether they thought PrEP could be integrated into a sexual agreement. Data for this study are drawn from couple-level interviews conducted in 2014 with 29 HIV-negative male couples who had a sexual agreement and were from Atlanta or Detroit. Both passive (e.g., flyers) and active (e.g., targeted Facebook advertisements) recruitment methods were used; the sample was stratified by agreement type. Thematic analysis was applied to identify the following themes regarding HIV-negative male couples' attitudes toward PrEP use: (1) PrEP and condom use; (2) concerns about PrEP (e.g., effectiveness, side effects, and promoting sexually risky behavior); and (3) accessibility of PrEP. Some thought PrEP could be a part of couples' agreement because it could help reduce sexual anxiety and sexual risk, and would help keep the couple safe. Others described PrEP use with an agreement as something for "others". Some were also concerned that incorporating PrEP could usurp the need for a sexual agreement in a couples' relationship. These themes highlight the need to improve informational messaging and promotion efforts about PrEP among HIV-negative male couples who may benefit from using it

Perceptions of Barriers to and Facilitators of Participation in Transgender Health Research

Background/Aims: Research regarding the health of transgender and gender-nonconforming (T/GNC) individuals and, moreover, methodological considerations for recruitment of this population, is scarce. As part of a larger effort to understand the feasibility of developing a cohort study to examine long-term health outcomes of hormonal therapy, we conducted focus group discussions to qualitatively explore attitudes toward health research involving T/GNC individuals. Specifically, we aimed to explore the potential facilitators and barriers to recruitment and enrollment and to identify points of influence that would aid future recruitment. Methods: Data were drawn from 12 in-person focus group discussions with 75 self-identified T/GNC men and women in Atlanta (n = 37) and San Francisco Bay Area (n = 38). Discussions were stratified by gender and project site and were audio-recorded. The resulting transcripts were then reviewed for potential conceptual categories using the focus group discussion questions as initial categories. Emergent themes were identified based on both recurrence and similarities/differences noted across transcripts. Results: Preliminary analyses suggest that individuals who identify as T/GNC experience several barriers to research participation. These include: 1) being unaware of the research, 2) having transportation and financial challenges, 3) believing that the research questions are irrelevant to the lives of T/GNC individuals, and 4) feeling distrustful of the medical and research community. Suggestions for how to improve research participation by individuals in the T/GNC community include: 1) recruiting in diverse community-based locations using face-to-face referral/snowball-based methods; 2) scheduling research visits in locations accessible via public transportation and offering a variety of days/times to accommodate personal and professional responsibilities; 3) providing incentives including cash/gift cards, food and free/discounted health services; and 4) prioritizing transparency regarding the research questions and how the results will benefit the T/GNC community. Additional analyses of the transcripts using MAXQDA software will be conducted prior to the conference. Conclusion: T/GNC individuals form a sizeable, unique and underserved community. Understanding the barriers and facilitators of successful enrollment and retention in research studies is critical to addressing health disparities experienced by this community. Results from these analyses will help to identify points of influence that would aid recruitment of T/GNC individuals into future observational studies and intervention trials

A Qualitative Exploration of Perceived Health Issues Among Transgender Individuals in Atlanta and San Francisco

Background/Aims: To date, health literature concerning lesbian, gay, bisexual and transgender (LGBT) persons has grouped these individuals into a single LGBT community. Lack of knowledge about transgender or gender-nonconforming (T/GNC) individuals, specifically, precludes T/GNC health from the public health agenda. To address this gap, we undertook a qualitative exploratory study to examine the perceptions of health issues among T/GNC individuals, including the perceived barriers to accessing health care and reliable information about health care services. Methods: Data were drawn from 12 focus group discussions with 75 self-identified T/GNC men and women in Atlanta (n = 37) and San Francisco Bay Area (n = 38). Focus group discussions were stratified by gender and project site and were audio-recorded. The resulting transcripts were then reviewed for potential conceptual categories. Emergent themes were identified based on recurrence and on similarities/differences noted across the transcripts. Results: Preliminary analyses suggest that T/GNC participants are most concerned about HIV/AIDS, mental illness related to trauma and depression, cancer risk and the long-term effects of hormone use. Participants reported experiencing many barriers to receiving timely and effective health care services. These barriers included: 1) poor access to affordable care (primarily due to cost/lack of health insurance coverage), 2) poor availability of culturally competent care, 3) perceived discrimination by health care providers, 4) difficulties navigating complex health care systems, and 5) lack of reliable information about transgender health care services. Though participants felt that the Internet can be a helpful resource for identifying information about providers and services, many participants expressed concerns that online information was not always accurate and was frequently confusing and inadequate. Word-of-mouth and social media resources were perceived to be most helpful. Additional analyses using MAXQDA software will be conducted prior to the conference. Conclusion: Prior research demonstrates a deficiency in information regarding long-term health outcomes for T/GNC individuals. Our preliminary results indicate that T/GNC participants express concerns regarding the long-term effects of cross-sex hormones and surgery on chronic conditions like cancer, diabetes and cardiovascular disease. Additionally, despite recent advances in transgender care, many individuals experience significant barriers to accessing affordable, timely and culturally competent care and reliable information. Lessons learned from this study may inform future behavior-, health system- and policy-level interventions