scholarly journals “I would really want to know that they had my back”: Transgender women’s perceptions of HIV cure-related research in the United States

PLoS ONE ◽  
2020 ◽  
Vol 15 (12) ◽  
pp. e0244490
Author(s):  
Tonia Poteat ◽  
Anushka Aqil ◽  
Dana Corbett ◽  
David Evans ◽  
Karine Dubé

Forty-four percent of Black transgender women are living with HIV, and many face challenges with HIV care engagement. An HIV cure has much to offer this population, however little HIV cure-related research has included them. We conducted 19 face-to-face in-depth interviews with 10 Black transgender women living with HIV. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. Our interview guide contained three categories: 1) perceptions of HIV cure-related research and participation, 2) perceptions of HIV treatment and treatment interruptions, and 3) considerations for transgender women and HIV cure-related research. Salient themes included skepticism about HIV cure strategies and limited benefits compared with an undetectable viral load. Willingness to interrupt HIV treatment for research was low and linked to being able to go back on the same HIV treatment without consequence when the study ended. Concerns about being a test subject and perceptions of risks versus benefits of various strategies also affected willingness to take part in HIV cure-related research. Centering the dignity and autonomy of research participants as well as building upon and supporting existing social networks were identified as important facilitators for engaging Black transgender women in HIV cure-related research. Specific to Black transgender women, other concerns included the desire for gender-affirming research staff, community-building among transgender women, and safety issues associated with risk of transphobic violence when traveling to study visits. Participants stressed the importance of HIV cure-related researchers providing accessible and complete information and expressing genuine care and concern for transgender communities.

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254148
Author(s):  
John Kanazawa ◽  
Sara Gianella ◽  
Susanna Concha-Garcia ◽  
Jeff Taylor ◽  
Andy Kaytes ◽  
...  

Background A unique window of opportunity currently exists to generate ethical and practical considerations presented by interventional HIV cure-related research at the end-of-life (EOL). Because participants would enroll in these studies for almost completely altruistic reasons, they are owed the highest ethical standards, safeguards, and protections. This qualitative empirical ethics study sought to identify ethical and practical considerations for interventional HIV cure-related research at the EOL. Methods and findings We conducted 20 in-depth interviews and three virtual focus groups (N = 36) with four key stakeholder groups in the United States: 1) bioethicists, 2) people with HIV, 3) HIV care providers, and 4) HIV cure researchers. This study produced six key themes to guide the ethical implementation of interventional HIV cure-related research at the EOL: 1) all stakeholder groups supported this research conditioned upon a clearly delineated respect for participant contribution and autonomy, participant understanding and comprehension of the risks associated with the specific intervention(s) to be tested, and broad community support for testing of the proposed intervention(s); 2) to ensure acceptable benefit-risk profiles, researchers should focus on limiting the risks of unintended effects and minimizing undue pain and suffering at the EOL; 3) only well-vetted interventions that are supported by solid pre-clinical data should be tested in the EOL translational research model; 4) the informed consent process must be robust and include process consent; 5) research protocols should be flexible and adopt a patient/participant centered approach to minimize burdens and ensure their overall comfort and safety; and 6) a participant’s next-of-kin/loved ones should be a major focus of EOL research but only if the participant consents to such involvement. Conclusions To our knowledge, this empirical ethics study generated the first ethical and practical considerations for interventional HIV cure-related research at the EOL. The ethical complexities of such research must be considered now. We must navigate this ethical conundrum so that we are good stewards of the participants’ extremely altruistic gifts by maximizing the impact and social value of this research. We hope that this study will serve as the foundation for future research and discussion on this topic.


2021 ◽  
Vol 3 ◽  
Author(s):  
Jae M. Sevelius ◽  
Torsten B. Neilands ◽  
Cathy J. Reback ◽  
Danielle Castro ◽  
Samantha E. Dilworth ◽  
...  

Introduction: Transgender women (assigned “male” at birth but who do not identify as male) are disproportionately impacted by HIV and experience unique barriers and facilitators to HIV care engagement. In formative work, we identified culturally specific and modifiable barriers to HIV treatment engagement among transgender women living with HIV (TWH), including prioritizing transition-related healthcare over HIV treatment, avoiding HIV care settings due to gender-related and HIV stigma, concerns about potential drug interactions with hormones, and inadequate social support. Grounded in the investigators' Models of Gender Affirmation and Health Care Empowerment, we developed the Healthy Divas intervention to optimize engagement in HIV care among TWH at risk for treatment failure and consequential morbidity, mortality, and onward transmission of HIV.Methods and Analysis: We conducted a 2-arm randomized controlled trial (RCT) of the intervention's efficacy in Los Angeles and San Francisco to improve engagement in care among TWH (N = 278). The primary outcome was virologic control indicated by undetectable HIV-1 level (undetectability = < 20 copies/mL), at baseline and follow-up assessment for 12 months at 3-month intervals.Ethics and Dissemination: This study was approved by University of California, San Francisco Institutional Review Board (15-17910) and Western Institutional Review Board (20181370). Participants provided informed consent before enrolment in the study. We are committed to collaboration with National Institutes of Health officials, other researchers, and health and social services communities for rapid dissemination of data and sharing of materials. The results will be published in peer-reviewed academic journals and scientific presentations. We will make our results available to researchers interested in transgender health to avoid unintentional duplication of research, as well as to others in health and social services communities, including HIV clinics, LGBT community-based organizations, and AIDS service organizations.Clinical Trial Registration:Clinicaltrials.gov, identifier NCT03081559.


Author(s):  
Jorge Alonzo ◽  
◽  
Lilli Mann-Jackson ◽  
Jesús García ◽  
Amanda E. Tanner ◽  
...  

Young gay, bisexual, and other MSM (men who have sex with men) and transgender women in the United States (US) who are living with HIV, and particularly those who are Latino, have low rates of viral suppression. The weCare intervention uses social media to increase HIV care engagement. Method: We used community-based participatory research to develop the intervention as well as theory-based social media messages tailored to each participant’s unique context. We analyzed elements and characteristics of weCare, messages sent by the Cyber Health Educator (CHE), and lessons learned to meet the needs of Latino participants living with HIV. Results: We identified 6 core elements, 5 key characteristics, effective social media messages used in implementation, and 8 important lessons regarding relationships between the CHE and HIV clinics, the CHE and participants, and participants and the health system. Conclusions: Social media offers a promising platform to retain young Latino gay bisexual and other MSM and transgender women living with HIV in care and achieve viral suppression.


2021 ◽  
Author(s):  
Vasiliki Papageorgiou ◽  
Bethan Davies ◽  
Emily Cooper ◽  
Ariana Singer ◽  
Helen Ward

AbstractDespite developments in HIV treatment and care, disparities persist with some not fully benefiting from improvements in the HIV care continuum. We conducted a systematic review to explore associations between social determinants and HIV treatment outcomes (viral suppression and treatment adherence) in high-income countries. A random effects meta-analysis was performed where there were consistent measurements of exposures. We identified 83 observational studies eligible for inclusion. Social determinants linked to material deprivation were identified as education, employment, food security, housing, income, poverty/deprivation, socioeconomic status/position, and social class; however, their measurement and definition varied across studies. Our review suggests a social gradient of health persists in the HIV care continuum; people living with HIV who reported material deprivation were less likely to be virologically suppressed or adherent to antiretrovirals. Future research should use an ecosocial approach to explore these interactions across the lifecourse to help propose a causal pathway.


2019 ◽  
Author(s):  
Delarise Mulqueeny ◽  
Manduleli Herald Pokiya ◽  
Praba Naidoo

Abstract Background: The Human Immunodeficiency virus (HIV) is a global, chronic health challenge that warrants a multidimensional approach to treatment and care. Notwithstanding the strides made in suppressing the virus, evidence illustrates challenges in persons living with HIV (PLHIV) experiences of treatment and care. Such experiences threaten HIV patients’ retention, adherence, mortality, comorbidities and the global community’s efforts to end the AIDS epidemic by 2030. A patient-centred approach (PCC) to HIV care and treatment could improve patients’ health care experiences, wellbeing, retention and adherence and strengthen patient-provider relationships, Hence, the aim of this scoping review is to comprehensively map existing evidence of PCC in HIV treatment and care. Additionally, the review will identify and describe gaps that could inform future research and interventional programmes or the need for systematic reviews. Methods and analysis: As HIV PCC is a broad topic, a systematic scoping review, that includes peer-reviewed journal articles and grey literature will be conducted. Online databases: (Google scholar, Scopus, EBSCOhost, PsycINFO via ProQuest, PsycARTICLES via ProQuest, International Bibliography of the Social Sciences (IBSS) via ProQuest, UNAIDS databases will be accessed. Humanitarian databases such as the World Health Organization (WHO) and United Nations Educational, Scientific and Cultural Organization (UNESCO) will also be accessed to identify literature on PCC for PLHIV. Such literature will be published between 2009 and 2019. Two reviewers will independently extract data from relevant search engines, utilising specific inclusion and exclusion standards. Thereafter thematic content analysis will be performed, and a narrative account of the findings will be presented. Discussion: As this is a scoping review, no ethical approval is required. Once the review is completed all summarized data will be disseminated in peer-reviewed journals, at national and international conferences, clinical settings and to policy makers. This is aimed at improving PLHIV’s experiences in clinical settings, practice and care. Keywords: HIV, patient-centred care, patient experiences, ART programme; ARVS; patients


2019 ◽  
Vol 3 (s1) ◽  
pp. 74-74
Author(s):  
Crystal Chapman Lambert ◽  
Chastity McDavid ◽  
Tammi F. Thomas ◽  
Kiko King ◽  
Andres Azuero ◽  
...  

OBJECTIVES/SPECIFIC AIMS: Our primary objective was to understand the relationship between incident or recent stressful events and adherence to HIV care in the context of other person, environment, and HIV-specific stressors in a sample of Black women living with HIV (WLWH). METHODS/STUDY POPULATION: Thirty in-depth interviews were conducted with Black women living with HIV who receive care at an academic HIV primary care clinic in the Southern region of the United States to elicit stressful events influencing adherence to HIV care. Semi-structured interview guides were used to facilitate discussion regarding stressful events and adherence to HIV care. Interviews were audiotaped and transcribed verbatim. Transcripts were independently coded using a theme-based approach by two experienced coders, findings were compared, and discrepancies were resolved by discussion. RESULTS/ANTICIPATED RESULTS: Participants described frequently experiencing incident stressful events including death or serious illness of a close friend or family member, and relationship, financial, and employment difficulties. Furthermore, participants reported experiencing traumatic events such as sexual and physical abuse during childhood and adolescents. While experiencing traumatic events such as sexual and physical abuse during childhood and adolescence may be distressing, these events did not influence adherence to HIV care. However, incident stressful events as defined above did influence adherence to HIV care for some participants, but not for others. For participants who reported that stressful events did not influence adherence to HIV care, factors such as personal motivation, access to social support, and adaptive coping strategies facilitated their engagement in care. DISCUSSION/SIGNIFICANCE OF IMPACT: Experiencing stressful events, incident or traumatic, is common among Black WLWH and have the potential to negatively influence adherence to HIV care. Thus, Interventions aimed at identifying and addressing stress, social support, and coping are essential to improve adherence to HIV care behaviors.


2018 ◽  
Vol 6 ◽  
pp. 205031211881691 ◽  
Author(s):  
Shashi N Kapadia ◽  
Robert R Grant ◽  
Susan B German ◽  
Baljinder Singh ◽  
Amy L Davidow ◽  
...  

Background: Single-tablet regimens are preferred prescription choices for HIV treatment, but there are limited outcomes data comparing single-tablet regimens to multiple-tablet regimens. Methods: We retrospectively assessed treatment-naïve patients at a single urban HIV clinic in the United States for viral load suppression at 6 and 12 months after initiating either single-tablet or multiple-tablet regimens. Multivariate regression was performed to obtain relative risks and adjust for potential confounders. Results: Of 218 patients, 47% were on single-tablet regimens and 53% on multiple-tablet regimens; 77% of single-tablet regimen patients had undetectable viral load at 6 months compared to 61% of multiple-tablet regimen patients (p = 0.012). At 12 months, 82% on single-tablet regimens and 66% on multiple-tablet regimens (p = 0.019) had undetectable viral load. Relative risk of any detectable viral load was 1.6 (95% confidence interval: 1.1–2.5) for patients on multiple-tablet regimens compared to single-tablet regimens at 6 months, and 2.2 (95% confidence interval: 1.2–4.0) at 12 months. Conclusion: Single-tablet regimens may provide better virologic control than multiple-tablet regimens in urban HIV-infected persons.


2019 ◽  
Vol 30 (11) ◽  
pp. 1049-1054 ◽  
Author(s):  
K Sorsdahl ◽  
NK Morojele ◽  
CD Parry ◽  
CT Kekwaletswe ◽  
N Kitleli ◽  
...  

Given that hazardous and harmful alcohol use has been identified as a significant barrier to adherence to antiretroviral therapy (ART) in South Africa, alcohol reduction interventions delivered within HIV treatment services are being investigated. Prior to designing and implementing an alcohol-focused screening and brief intervention (SBI), we explored patients’ perceptions of alcohol as a barrier to HIV treatment, the acceptability of providing SBIs for alcohol use within the context of HIV services and identifying potential barriers to patient uptake of this SBI. Four focus groups were conducted with 23 participants recruited from three HIV treatment sites in Tshwane, South Africa. Specific themes that emerged included: (1) barriers to ART adherence, (2) available services to address problematic alcohol use and (3) barriers and facilitators to delivering a brief intervention to address alcohol use within HIV care. Although all participants in the present study unanimously agreed that there was a great need for SBIs to address alcohol use among people living with HIV and AIDS, our study identified several areas that should be considered prior to implementing such a programme.


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