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

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          Abstract

          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.

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          Most cited references27

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          A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

          To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities' research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies.
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            Barriers to healthcare for transgender individuals.

            Transgender persons suffer significant health disparities and may require medical intervention as part of their care. The purpose of this manuscript is to briefly review the literature characterizing barriers to healthcare for transgender individuals and to propose research priorities to understand mechanisms of those barriers and interventions to overcome them.
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              Attitudes and beliefs of African Americans toward participation in medical research.

              To describe barriers to participation of African Americans in research. Focus group interviews conducted in 1997. Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups. African-American patients' attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research. African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials.
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                Author and article information

                Journal
                Transgend Health
                Transgend Health
                trgh
                Transgender Health
                Mary Ann Liebert, Inc. (140 Huguenot Street, 3rd FloorNew Rochelle, NY 10801USA )
                2380-193X
                01 October 2016
                2016
                01 October 2016
                : 1
                : 1
                : 187-196
                Affiliations
                [ 1 ]Department of Health Management and Policy, School of Public Health, Georgia State University , Atlanta, Georgia.
                [ 2 ]Department of Epidemiology, Rollins School of Public Health, Emory University , Atlanta, Georgia.
                [ 3 ]Division of Research , Kaiser Permanente Northern California, Oakland, California.
                [ 4 ]Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Emory University , Atlanta, Georgia.
                [ 5 ]Department of Anthropology, University of Connecticut , Storrs, Connecticut.
                [ 6 ]Department of Health Behavior and Biological Sciences, School of Nursing, University of Michigan , Ann Arbor, Michigan.
                Author notes
                [*] [ * ]Address correspondence to: Ashli A. Owen-Smith, PhD, SM, Department of Health Management and Policy, School of Public Health, Georgia State University, PO Box 3984, Atlanta, GA 30302-3984, E-mail: aowensmith@ 123456gsu.edu
                Article
                10.1089/trgh.2016.0023
                10.1089/trgh.2016.0023
                5549538
                28861532
                ef8a5b8c-95d1-47af-b91f-e8f85ff1d46e
                © Ashli A. Owen-Smith et al. 2016; Published by Mary Ann Liebert, Inc.

                This Open Access article is distributed under the terms of the Creative Commons License ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited.

                History
                Page count
                Tables: 1, References: 38, Pages: 10
                Categories
                Original Article

                content analysis/narrative analysis,focus group,gender identity,transgender

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