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A Principal Investigator as a PrEP-Using Peer Change Agent for HIV Prevention among Black Gay and Bisexual Men: An Autoethnography

PMCID: PMC10093874

PMID:

Abstract

HIV pre-exposure prophylaxis (PrEP) use remains suboptimal among Black gay and bisexual men (GBM). Multilevel factors such as medication costs, intersectional stigma, patient-clinician communication, medical mistrust, side effect concerns, and low perceived HIV risk (PHR) are well-established PrEP initiation barriers for this group. Peer change agents (PCAs) are culturally congruent interventionists who can circumvent multilevel PrEP barriers among Black GBM. I led an intervention as a PrEP-using PCA to improve PHR and PrEP willingness among 69 Black GBM from 2019–2022 and conducted an autoethnography to better understand multilevel barriers and identify the personal/professional challenges of being an in-group HIV interventionist serving Black SMM. Findings provide novel perspectives regarding PrEP barriers, the role of cultural homophily in behavior change interventions, and how interpersonal dynamics can impact staff fatigue, protocol fidelity, and research participation. Recommendations to prepare and support culturally congruent research staff are also provided.

Full Text

Pre-exposure prophylaxis (PrEP) is highly effective for HIV prevention [1,2,3]. In 2012, the U.S. Food and Drug Administration (FDA) approved Truvada® for HIV PrEP [4] then approved a smaller pill with fewer side effects called Descovy® in 2019 [5]. Despite increased awareness and access since 2012, PrEP use remains suboptimal among Black gay and bisexual men (GBM) [6,7]. Multilevel factors such as medication costs, intersectional stigma, patient-clinician communication, medical mistrust, side effect concerns, and low perceived HIV risk (PHR) are well-established PrEP use barriers for Black GBM [7,8,9,10,11]. For example, some Black GBM do not view themselves as PrEP candidates because they perceive their current sexual behaviors as lower risk than their past or their peers’ behaviors [8,9,12,13,14]. Some are also reluctant to accept a clinician’s PrEP recommendation due to experiencing poor clinical treatment [10,11,15]. Additionally, Black GBM consistently report reluctance to use PrEP partly because they believe that researchers and clinicians do not understand their experiences [10,15,16]. Approaches that address these barriers are urgently needed to improve PrEP use among Black GBM, particularly those under the age of 35 [17,18].
Some interventions leverage in-group members as peer change agents (PCAs) to change behavior [19,20,21]. For HIV prevention, PCAs are culturally congruent, trained professionals who understand the target population’s experiences, disseminate health information within the community, and promote healthy behaviors [19,20,21,22]. PCAs have helped improve behavioral health, HIV testing, treatment adherence, and PrEP initiation among several hard-to-engage populations [19,20,21,22,23]. PCAs are crucial for successful interventions among Black GBM because they are considered a more trusted resource than non-Black clinicians to obtain health information, discuss risks, and help them understand why PrEP could be helpful [9,15,24]. For example, PCAs build trust and circumvent barriers by using culturally acceptable and tailored language to describe clinical and research protocols, treatment recommendations, and shared experiences [9,15,19]. Studies show that Black GBM’s preferences for PCA characteristics include aesthetics, professionalism, language and social familiarity, PrEP use, and being a “future self” with whom they can relate [9,14,15].
Autoethnography is a research and analytic process that describes and explores the scientist’s experiences to systematically study and analyze a cultural phenomenon [25,26]. The researcher can obtain a deeper understanding of cultural norms, values, resources, emotions, and issues along with their self-identity by intentionally studying, recalling, reflecting, and writing about those experiences [27]. Autoethnography can provide a broader and nuanced understanding of cultural experiences in ways that cannot be captured in alternative qualitative approaches such as in-depth interviews or focus groups [28]. Specifically, autoethnography can provide details that may be missed because participants may consider some experiences as ordinary or unremarkable and not discuss them [25,26,29,30]. Some social scientists have published autoethnographies of health issues such as personal cancer journeys to better understand patient and professional perspectives [31,32]. Autoethnography in HIV prevention research can provide a broader and nuanced understanding of the multilevel experiences that create challenges improving PrEP among Black GBM. Autoethnography can also provide HIV researchers with greater insight regarding personal identity relative to health issues and minority populations.
The purpose of this study is to obtain a deeper understanding of the multilevel barriers of PrEP use among Black GBM and identify the professional issues for a PCA. Autoethnography can clarify the multilevel experiences of Black GBM and identify strategies to better engage them by comparing and contrasting personal experience relative to existing research [27,31,33]. Although autoethnographic experiences have been published for HIV treatment [34,35] and prevention [36], no autoethnography targeting PCA experiences in interventions serving Black GBM has been documented. Moreover, few health professionals are culturally congruent with Black GBM [37,38] and others might have different experiences that could prevent maximum exposure to the multilevel challenges prevalent among this marginalized minority population. Findings will provide novel perspectives regarding PrEP barriers, the role of cultural homophily in behavior change interventions, and how interpersonal dynamics can impact staff fatigue, protocol fidelity, and research participation.
I led a team that refined and implemented POSSIBLE, a multicomponent intervention to improve PHR and PrEP initiation among Black GBM in Baltimore, MD [9] guided by Life Course Theory (LCT) [39,40,41], the Health Belief Model (HBM) [42], and Possible Selves Theory [43]. LCT suggests that timing, major life events, and age-related exposures to risk impact health behaviors and outcomes [41,42,43,44,45]. The HBM posits that perceived disease susceptibility can increase health behaviors [46]. Possible Selves Theory represents individuals’ ideas of what they could or want to become and can motivate behavior change [43,47]. Taken together, this framework informed our hypothesis that PrEP initiation could be improved by providing Black GBM with a smartphone app called PrEPme® to self-monitor sexual behaviors and a PrEP-using PCA to review their risks and help change their PHR [9].
Formative research combined with extant literature suggested that the PCA should be a professional yet relatable PrEP-using Black GBM with similar multilevel experiences and a “future self” to whom participants could aspire [9,14,15]. Considering that HIV infections are highest and PrEP initiation is lowest among Black GBM under age 35 [17,48], we posited that the PCA should also be young with familiar experiences navigating relationships, HIV prevention behaviors, and PHR. Therefore, POSSIBLE was designed to cue Black GBM’s willingness to use PrEP by self-monitoring their behaviors and reviewing them with a young, PrEP-using “future self” who could tailor messaging relative to their sexual risks and PHR. This autoethnography was inherently guided by the tenets of LCT, the HBM, and Possible Selves Theory given the intervention design, my PrEP adherence, and dual role as a principal investigator and PCA along my own life course as a Black gay man from Baltimore City.
I served as the PCA for 69 HIV-negative Black GBM ages 18–67 who participated in POSSIBLE between 2019–2022. Participants were recruited using a combination of active and passive strategies [9,49,50] and were eligible based upon the following self-reported criteria: Black or African American race; male sex at birth; ≥18 years old; HIV-negative; being same-sex attracted to a man; and willing to use PrEPme® during the study. Baltimore City was selected as the study site given its high priority for the Ending the HIV Epidemic Plan for 2030 [51] and geographic convenience for the research team. However, the quarantine of the COVID-19 pandemic in 2020 forced research protocols to become virtual and study visits were conducted via Zoom [52].
Intervention study visits included 2 virtual sessions via Zoom one month apart. At baseline, I conducted a scripted motivational interview–consistent conversation to assess everyone’s lifestyles, goals and values, HIV risk behaviors, PHR, and PrEP interest [9]. At the end of baseline, I asked everyone to download PrEPme® to document their sexual risks in the app-based diary each week. In the second session, I reviewed their diaries with them virtually and led another scripted motivational interview–consistent conversation to explore motivations for HIV-related risk behaviors, identify how their behaviors aligned with their goals and values from baseline, and reassess their PrEP interest. I discussed their relative and acute risks for HIV, answered questions regarding PrEP efficacy and side effects, and tailored prevention messaging to help increase PHR [53] and willingness to be referred to PrEP services in both sessions. At the end of each session, I helped interested participants obtain PrEP services at locations of their choice. I occasionally disclosed my PrEP use, discussed personal perspectives regarding HIV prevention, and dispelled PrEP misinformation depending upon participant requests or comments.
Autoethnographic data collection included maintaining mental notes, jottings, and journal entries of PrEP care clinical visits and PrEP use along with POSSIBLE study visit summaries that were stored in participant folders [25,54]. Written and mental notes were documented after each study visit with participants, before and after PrEP visits, and after research team meetings in a designated research journal. Guided by the theoretical framework, formative research, and extant literature, note-taking focused on the social and cultural aspects of my PrEP use including barriers and facilitators along with interactions with participants as the principal investigator and PCA. Specifically, PrEP-related notes focused on known barriers such as stigma, costs, side effects, and PHR. Notes also focused on the range of feelings and attitudes towards the conversations and interpersonal dynamics between participants and I, including personal disclosures and professional concerns. Of note, I also attended weekly therapy sessions to support my mental health along my personal and professional journey.
Data analysis involved reviewing, organizing, and coding mental notes, jottings, and study visit summaries relative to the theoretical frameworks and extant literature regarding PrEP initiation barriers. Specific experiences of PrEP barriers were highlighted, coded, and organized by hand using a pawing technique then prioritized for description [55]. Attitudes towards my role as the PCA were also coded, organized, and reviewed for salience. I grouped all such instances together from relative documents (i.e., journal entries, case report forms, jottings) and examined them for similarities and differences by each domain [54]. To optimize data collection, analysis, and the trustworthiness of the interpretation of this autoethnography, I also included a Black female qualitative research consultant with expertise in patient–clinician communication, experience studying sexual minority populations, and personal knowledge of the Baltimore City context. We met weekly to discuss multilevel experiences of my PrEP use, process feelings regarding working with Black GBM as an in-group researcher, and explore attitudes towards the research [50,56]. To ensure the accuracy and quality of data in recounting certain events and experiences, I shared my experiences, feelings, and notes with the consultant who affirmed some notes and challenged me to better describe more accurate versions of some of the stories [28,57]. We also discussed limitations and potential biases because my understanding of clinical protocols along with experiences of stigma, racism, and discrimination impacted my relationship to the research and participants. The iterative reflexive process allowed me to identify and address biases, mature my perspective regarding the study factors, and obtain high-quality autoethnographic data [50,56].
I reinitiated PrEP (Descovy®) at the end of 2019 in response to formative research and my team suggesting that I serve the intervention as the PCA [9] rather than using the project as a vehicle for professional and personal safety as I had done with research as a graduate student. I maintained daily adherence for approximately a year and a half until I ended a romantic relationship at the beginning of 2021. I had enough pills left over to use PrEP on-demand (2 doses the day before sex, 1 dose the day of, and 1 the day after [2,58]) if I anticipated having a casual partner (which did not happen during that season). PrEP became an intimate part of an emotional, psychological, and sexual defense mechanism that I was uncomfortable relying on given the salient experiences of stigma as a Black gay man and constant reminders of being a part of a highly vulnerable and marginalized group.
Data presented describe the autoethnography of my role as a PrEP-using principal investigator and PCA in POSSIBLE by multilevel factors and salient professional challenges. Quotes from participants are provided to corroborate my personal assessments and make the text evocative by “showing” thoughts, emotions, and actions [26,54]. Intervention effects will be described in a separate publication.
I reinitiated PrEP at a primary care facility that was associated with a university hospital in Baltimore City. Even though I knew the HIV/STI screening guidelines, I always had an anxiety and fear of judgement as I anticipated the questions regarding my relationship status, partners’ gender, and sexual positioning practices (if clinicians asked at all). Clinical experiences were typically uncomfortable regardless of clinician demographic characteristics. The first provider I saw in Baltimore was a middle-aged white man who was unfamiliar with the PrEP treatment guidelines. I explained the guidelines to him to save both of us time, but he reviewed the Centers for Disease Control and Prevention website for confirmation before he agreed to fill the prescription. I was unsure if he was doing his due diligence as a clinician or if he did not believe me because I am Black. I was too uncomfortable with needing the prescription to ask. Although I did not have most of the PrEP indications (i.e., STI history, drug use, condomless sex), he said, “Given that HIV is so high in your group, I think it’s a good idea. I don’t want you to get it”. By his tone, I was also unsure if he really cared about my health or if he was just reviewing my profile like I was a number. It was always difficult to decide if and when I should relax as a patient or assert myself as a nursing professor to protect myself from the stigma [59]. I always felt a power imbalance with clinicians and staff because I needed health care from them that did not allow me to fully express my discomfort with the experiences or ask for the treatment that I really wanted. Communicating with clinicians about sexuality and PrEP became another gut punch from the HIV bully and triggered feelings of shame about being a member of a “high-risk” population.
PrEP care and daily adherence reinforced an awareness of the salient multilevel challenges of Black GBM that triggered feelings of isolation, shame, stigma, internalized homonegativity, resentment, and treatment refusal. PrEP use also triggered medical mistrust and treatment hesitancy due to feeling medicated for being a member of multiple minority groups. Some GBM suggest that PrEP liberates them to participate safely and freely without fear of HIV [60]. Similarly, I found that PrEP reduced some concerns regarding HIV acquisition. However, the perceived benefits of using PrEP to prevent HIV did not outweigh persistent feelings of loneliness, resentment, stigma, and shame along with the challenges navigating barriers. Navigating multilevel PrEP barriers was ongoing and challenging with limited support. I needed to rely upon my identity as a health professor to help reduce inequitable feelings of shame, stigma, distress, and costliness as a PrEP-using PCA. Few aspects of the PrEP care process supported willingness, initiation, and adherence.
Despite embracing an empowering community health agenda, this autoethnography reinforced the constant awareness of my multiple marginalized identities that persisted regardless of my self-efficacy or socio-economic status. W.E.B. Du Bois described a “twoness”, a double consciousness that many Black people experience as they navigate life as racial minorities in America. The double consciousness refers to viewing oneself in the eyes of white people, an imposed self-awareness with competing ideals and goals as Black and American [61]. For Black GBM, this concept is germane to the clinical setting as we view ourselves through the eyes of primarily white clinicians in a socioecological context designed by white heterosexuals in service of white people. As Americans, some of us have access to quality healthcare. However, as Black men, the vulnerability to poor treatment from PrEP-prescribing clinicians (or any other social system in America) is inescapable [62,63,64]. Black GBM who have less awareness of screening protocols and less capacity to navigate and interpersonal dynamics with clinicians experience even greater unresolved barriers that must be eliminated [10,59,63].
I suggest that Black GBM experience a “threeness”, an added identity as a sexual minority that could create a triple consciousness [65], exacerbate negative self-perceptions, and reduce health maintenance [59]. The threeness can refer to the competing ideals, goals, and worlds as Black, queer, and American [59,65]. While the twoness yields a double consciousness of identities due to Black race as Americans, the threeness exacerbates competing self-consciousness given an added sexual minority status. Specifically, identifying as gay or bisexual adds to the marginalization of Black GBM in the eyes of mostly white clinicians and social systems (including healthcare) that perpetuate stigma and isolation. Additionally, the challenges associated with navigating and developing romantic relationships are arguably unique for Black GBM given prevalent histories of trauma, isolation, and community HIV/STI risk, all of which can impact trust. This autoethnography highlighted my self-consciousness in the eyes of white clinicians but also of other Black and GBM individuals. I struggled to fully overcome multilevel PrEP/social barriers given my competing goals as a Black and gay and American professional man. I am uncertain if I ever can. Hopefully it is “possible”.
This study became a safe vehicle by which I could live in my hometown as an adult Black gay man vis-à-vis my relationship with the men in POSSIBLE despite interpersonal, intrapersonal, administrative, and professional challenges. My age at the time influenced my clinical, professional, and social experiences given the context of navigating as a 20-something year old and changed my relationship to PrEP, my research, peers, and participants. Being the PCA could have saved someone’s life despite my challenges and reservations to serving in the role. Autoethnographic data analysis and writing helped heal intrapersonal challenges [31]. Consulting other researchers and participating in mental health services was crucial during this process. Sharing familiar experiences with peer-participants was also healing, hopefully in a bi-directional way.
PCAs require additional support from colleagues and supervisors to ensure their personal safety and professional identity. The emotional, financial, and psychological burden required from the role was not equitable. For example, navigating social and potentially romantic interactions with other Black GBM in this culturally congruent work is unique given the potential for same-sex attraction. The extreme homophily of the PCA in PrEP interventions among Black GBM could increase staff fatigue and turnover as well as affect recruitment, retention, and engagement depending upon the rapport with participants [50]. Research teams should ensure frequent (e.g., weekly) meetings with PCAs to assess their personal and professional wellbeing and consider having two staff members present in intervention meetings to increase support. Moreover, the salary for PCAs should be increased given the required experience, expertise, costs associated with PrEP care, and fees for recommended mental health services.
PrEP-prescribing clinicians and clinical support staff should be aware of the multilevel adversities that Black GBM experience prior to, during, and after clinical visits. Clinicians should ensure that they follow CDC guidance regarding open communication with patients and that they incorporate knowledge of multilevel challenges of Black GBM into their conversation to build rapport, alleviate stigma, and support PrEP adherence. For example, clinicians could proactively acknowledge and assuage patient concerns regarding sexuality discussions, PrEP and sexuality stigma, and extragenital screening protocols. Clinicians should also inform patients that PrEP use could trigger feelings of stigma and shame throughout the experience and affirm their decisions to demonstrate compassion and empathy. However, ICD-10 codes for clinical diagnoses and billing must be updated to more accurately describe the nature of clinical visits among GBM and reduce stigma. Trauma-informed care models integrate knowledge about patient histories into their policies, practices, and procedures regardless of the demographic composition of care teams and can improve treatment adherence [66,67].
Additionally, clinical care teams could be a source of emotional and psychological support during and in-between visits to facilitate initiation and adherence among Black GBM [15,24]. Productive and familial-like patient communication can reduce stigma and increase patient treatment adherence [68,69,70]. Clinicians could also use PrEP to alleviate sexuality- and medication-based stigma and reduce medical mistrust [9,15]. PrEP provides a unique opportunity for patients to request that health professionals who do not have a disease to use and disclose experiences using a medication they recommend [15]. Unlike other chronic conditions such as cancer or hypertension, where medication is used for a present disease, it is reasonable for apprehensive patients to ask HIV-negative researchers and clinicians to use PrEP to help reduce medical mistrust and demonstrate their commitment to community health with Black GBM. Having clinicians who disclose their own PrEP use could create an equitable atmosphere with patients that removes barriers of race, gender, and sexual orientation. Black-led clinical care teams are considered more trustworthy than white clinicians and could also help improve adherence for Black GBM [15,24].
This study is not without limitations. My professional expertise in sexual health coupled with previous PrEP experience provided support for my adherence that may not have occurred otherwise and impacted my participant interactions. I could not fully divorce myself from my role as principal investigator and professor, which impacted my PCA experience. I did not focus on alternative PrEP modalities such as on-demand PrEP or injectable Cabotegravir [2,58,71]. Also, it will be difficult if not impossible for other researchers (including myself) to replicate this study and experience similar findings given the age- and culturally- specific nature of this research.
Future research should test the relative impact of the PCA on PrEP initiation among Black GBM. Larger efficacy trials are needed to identify the efficacy and equitability of leveraging in-group members as PCAs given the emotional and psychological burden that will be placed on research staff. Interventions should also identify and utilize PCAs with culturally acceptable characteristics beyond race and sexuality congruence that might be useful to Black GBM. Future research should also consider replicating the premise of this study using the newly approved PrEP injection for HIV prevention that only requires treatment once every two months and therefore inherently reduces exposure to some multilevel barriers [72].
Negative psychosocial experiences are salient along the life course of Black GBM and illuminated by PrEP. The PrEP care experience also triggered unresolved emotional and psychological factors as a minority American that are not adequately addressed by PrEP care or research teams. The cumulative role of trauma, stigma, homonegativity, PHR, and fear impacted clinical engagement and PrEP use and should be reconceptualized for Black GBM. I hope this autoethnography underscores how interrelated and salient multilevel factors are for us and how they impact, health behaviors, goals, and values. However, this autoethnography provided some healing by systematically studying, describing, and sharing [31]. I have hope that researchers and clinicians can find humanity in this work.

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"[{\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B1-ijerph-20-05309\", \"B2-ijerph-20-05309\", \"B3-ijerph-20-05309\", \"B4-ijerph-20-05309\", \"B5-ijerph-20-05309\", \"B6-ijerph-20-05309\", \"B7-ijerph-20-05309\", \"B7-ijerph-20-05309\", \"B8-ijerph-20-05309\", \"B9-ijerph-20-05309\", \"B10-ijerph-20-05309\", \"B11-ijerph-20-05309\", \"B8-ijerph-20-05309\", \"B9-ijerph-20-05309\", \"B12-ijerph-20-05309\", \"B13-ijerph-20-05309\", \"B14-ijerph-20-05309\", \"B10-ijerph-20-05309\", \"B11-ijerph-20-05309\", \"B15-ijerph-20-05309\", \"B10-ijerph-20-05309\", \"B15-ijerph-20-05309\", \"B16-ijerph-20-05309\", \"B17-ijerph-20-05309\", \"B18-ijerph-20-05309\"], \"section\": \"1. Introduction\", \"text\": \"Pre-exposure prophylaxis (PrEP) is highly effective for HIV prevention [1,2,3]. In 2012, the U.S. Food and Drug Administration (FDA) approved Truvada\\u00ae for HIV PrEP [4] then approved a smaller pill with fewer side effects called Descovy\\u00ae in 2019 [5]. Despite increased awareness and access since 2012, PrEP use remains suboptimal among Black gay and bisexual men (GBM) [6,7]. Multilevel factors such as medication costs, intersectional stigma, patient-clinician communication, medical mistrust, side effect concerns, and low perceived HIV risk (PHR) are well-established PrEP use barriers for Black GBM [7,8,9,10,11]. For example, some Black GBM do not view themselves as PrEP candidates because they perceive their current sexual behaviors as lower risk than their past or their peers\\u2019 behaviors [8,9,12,13,14]. Some are also reluctant to accept a clinician\\u2019s PrEP recommendation due to experiencing poor clinical treatment [10,11,15]. Additionally, Black GBM consistently report reluctance to use PrEP partly because they believe that researchers and clinicians do not understand their experiences [10,15,16]. Approaches that address these barriers are urgently needed to improve PrEP use among Black GBM, particularly those under the age of 35 [17,18].\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B19-ijerph-20-05309\", \"B20-ijerph-20-05309\", \"B21-ijerph-20-05309\", \"B19-ijerph-20-05309\", \"B20-ijerph-20-05309\", \"B21-ijerph-20-05309\", \"B22-ijerph-20-05309\", \"B19-ijerph-20-05309\", \"B20-ijerph-20-05309\", \"B21-ijerph-20-05309\", \"B22-ijerph-20-05309\", \"B23-ijerph-20-05309\", \"B9-ijerph-20-05309\", \"B15-ijerph-20-05309\", \"B24-ijerph-20-05309\", \"B9-ijerph-20-05309\", \"B15-ijerph-20-05309\", \"B19-ijerph-20-05309\", \"B9-ijerph-20-05309\", \"B14-ijerph-20-05309\", \"B15-ijerph-20-05309\"], \"section\": \"1. Introduction\", \"text\": \"Some interventions leverage in-group members as peer change agents (PCAs) to change behavior [19,20,21]. For HIV prevention, PCAs are culturally congruent, trained professionals who understand the target population\\u2019s experiences, disseminate health information within the community, and promote healthy behaviors [19,20,21,22]. PCAs have helped improve behavioral health, HIV testing, treatment adherence, and PrEP initiation among several hard-to-engage populations [19,20,21,22,23]. PCAs are crucial for successful interventions among Black GBM because they are considered a more trusted resource than non-Black clinicians to obtain health information, discuss risks, and help them understand why PrEP could be helpful [9,15,24]. For example, PCAs build trust and circumvent barriers by using culturally acceptable and tailored language to describe clinical and research protocols, treatment recommendations, and shared experiences [9,15,19]. Studies show that Black GBM\\u2019s preferences for PCA characteristics include aesthetics, professionalism, language and social familiarity, PrEP use, and being a \\u201cfuture self\\u201d with whom they can relate [9,14,15].\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B25-ijerph-20-05309\", \"B26-ijerph-20-05309\", \"B27-ijerph-20-05309\", \"B28-ijerph-20-05309\", \"B25-ijerph-20-05309\", \"B26-ijerph-20-05309\", \"B29-ijerph-20-05309\", \"B30-ijerph-20-05309\", \"B31-ijerph-20-05309\", \"B32-ijerph-20-05309\"], \"section\": \"Autoethnography\", \"text\": \"Autoethnography is a research and analytic process that describes and explores the scientist\\u2019s experiences to systematically study and analyze a cultural phenomenon [25,26]. The researcher can obtain a deeper understanding of cultural norms, values, resources, emotions, and issues along with their self-identity by intentionally studying, recalling, reflecting, and writing about those experiences [27]. Autoethnography can provide a broader and nuanced understanding of cultural experiences in ways that cannot be captured in alternative qualitative approaches such as in-depth interviews or focus groups [28]. Specifically, autoethnography can provide details that may be missed because participants may consider some experiences as ordinary or unremarkable and not discuss them [25,26,29,30]. Some social scientists have published autoethnographies of health issues such as personal cancer journeys to better understand patient and professional perspectives [31,32]. Autoethnography in HIV prevention research can provide a broader and nuanced understanding of the multilevel experiences that create challenges improving PrEP among Black GBM. Autoethnography can also provide HIV researchers with greater insight regarding personal identity relative to health issues and minority populations.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B27-ijerph-20-05309\", \"B31-ijerph-20-05309\", \"B33-ijerph-20-05309\", \"B34-ijerph-20-05309\", \"B35-ijerph-20-05309\", \"B36-ijerph-20-05309\", \"B37-ijerph-20-05309\", \"B38-ijerph-20-05309\"], \"section\": \"Autoethnography\", \"text\": \"The purpose of this study is to obtain a deeper understanding of the multilevel barriers of PrEP use among Black GBM and identify the professional issues for a PCA. Autoethnography can clarify the multilevel experiences of Black GBM and identify strategies to better engage them by comparing and contrasting personal experience relative to existing research [27,31,33]. Although autoethnographic experiences have been published for HIV treatment [34,35] and prevention [36], no autoethnography targeting PCA experiences in interventions serving Black GBM has been documented. Moreover, few health professionals are culturally congruent with Black GBM [37,38] and others might have different experiences that could prevent maximum exposure to the multilevel challenges prevalent among this marginalized minority population. Findings will provide novel perspectives regarding PrEP barriers, the role of cultural homophily in behavior change interventions, and how interpersonal dynamics can impact staff fatigue, protocol fidelity, and research participation.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B9-ijerph-20-05309\", \"B39-ijerph-20-05309\", \"B40-ijerph-20-05309\", \"B41-ijerph-20-05309\", \"B42-ijerph-20-05309\", \"B43-ijerph-20-05309\", \"B41-ijerph-20-05309\", \"B42-ijerph-20-05309\", \"B43-ijerph-20-05309\", \"B44-ijerph-20-05309\", \"B45-ijerph-20-05309\", \"B46-ijerph-20-05309\", \"B43-ijerph-20-05309\", \"B47-ijerph-20-05309\", \"B9-ijerph-20-05309\"], \"section\": \"2.1. Theoretical Framework\", \"text\": \"I led a team that refined and implemented POSSIBLE, a multicomponent intervention to improve PHR and PrEP initiation among Black GBM in Baltimore, MD [9] guided by Life Course Theory (LCT) [39,40,41], the Health Belief Model (HBM) [42], and Possible Selves Theory [43]. LCT suggests that timing, major life events, and age-related exposures to risk impact health behaviors and outcomes [41,42,43,44,45]. The HBM posits that perceived disease susceptibility can increase health behaviors [46]. Possible Selves Theory represents individuals\\u2019 ideas of what they could or want to become and can motivate behavior change [43,47]. Taken together, this framework informed our hypothesis that PrEP initiation could be improved by providing Black GBM with a smartphone app called PrEPme\\u00ae to self-monitor sexual behaviors and a PrEP-using PCA to review their risks and help change their PHR [9].\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B9-ijerph-20-05309\", \"B14-ijerph-20-05309\", \"B15-ijerph-20-05309\", \"B17-ijerph-20-05309\", \"B48-ijerph-20-05309\"], \"section\": \"2.1. Theoretical Framework\", \"text\": \"Formative research combined with extant literature suggested that the PCA should be a professional yet relatable PrEP-using Black GBM with similar multilevel experiences and a \\u201cfuture self\\u201d to whom participants could aspire [9,14,15]. Considering that HIV infections are highest and PrEP initiation is lowest among Black GBM under age 35 [17,48], we posited that the PCA should also be young with familiar experiences navigating relationships, HIV prevention behaviors, and PHR. Therefore, POSSIBLE was designed to cue Black GBM\\u2019s willingness to use PrEP by self-monitoring their behaviors and reviewing them with a young, PrEP-using \\u201cfuture self\\u201d who could tailor messaging relative to their sexual risks and PHR. This autoethnography was inherently guided by the tenets of LCT, the HBM, and Possible Selves Theory given the intervention design, my PrEP adherence, and dual role as a principal investigator and PCA along my own life course as a Black gay man from Baltimore City.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B9-ijerph-20-05309\", \"B49-ijerph-20-05309\", \"B50-ijerph-20-05309\", \"B51-ijerph-20-05309\", \"B52-ijerph-20-05309\"], \"section\": \"2.2. Study Participants & Setting\", \"text\": \"I served as the PCA for 69 HIV-negative Black GBM ages 18\\u201367 who participated in POSSIBLE between 2019\\u20132022. Participants were recruited using a combination of active and passive strategies [9,49,50] and were eligible based upon the following self-reported criteria: Black or African American race; male sex at birth; \\u226518 years old; HIV-negative; being same-sex attracted to a man; and willing to use PrEPme\\u00ae during the study. Baltimore City was selected as the study site given its high priority for the Ending the HIV Epidemic Plan for 2030 [51] and geographic convenience for the research team. However, the quarantine of the COVID-19 pandemic in 2020 forced research protocols to become virtual and study visits were conducted via Zoom [52].\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B9-ijerph-20-05309\", \"B53-ijerph-20-05309\"], \"section\": \"2.3. Intervention Protocol\", \"text\": \"Intervention study visits included 2 virtual sessions via Zoom one month apart. At baseline, I conducted a scripted motivational interview\\u2013consistent conversation to assess everyone\\u2019s lifestyles, goals and values, HIV risk behaviors, PHR, and PrEP interest [9]. At the end of baseline, I asked everyone to download PrEPme\\u00ae to document their sexual risks in the app-based diary each week. In the second session, I reviewed their diaries with them virtually and led another scripted motivational interview\\u2013consistent conversation to explore motivations for HIV-related risk behaviors, identify how their behaviors aligned with their goals and values from baseline, and reassess their PrEP interest. I discussed their relative and acute risks for HIV, answered questions regarding PrEP efficacy and side effects, and tailored prevention messaging to help increase PHR [53] and willingness to be referred to PrEP services in both sessions. At the end of each session, I helped interested participants obtain PrEP services at locations of their choice. I occasionally disclosed my PrEP use, discussed personal perspectives regarding HIV prevention, and dispelled PrEP misinformation depending upon participant requests or comments.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B25-ijerph-20-05309\", \"B54-ijerph-20-05309\"], \"section\": \"2.4. Autoethnographic Data Collection\", \"text\": \"Autoethnographic data collection included maintaining mental notes, jottings, and journal entries of PrEP care clinical visits and PrEP use along with POSSIBLE study visit summaries that were stored in participant folders [25,54]. Written and mental notes were documented after each study visit with participants, before and after PrEP visits, and after research team meetings in a designated research journal. Guided by the theoretical framework, formative research, and extant literature, note-taking focused on the social and cultural aspects of my PrEP use including barriers and facilitators along with interactions with participants as the principal investigator and PCA. Specifically, PrEP-related notes focused on known barriers such as stigma, costs, side effects, and PHR. Notes also focused on the range of feelings and attitudes towards the conversations and interpersonal dynamics between participants and I, including personal disclosures and professional concerns. Of note, I also attended weekly therapy sessions to support my mental health along my personal and professional journey.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B55-ijerph-20-05309\", \"B54-ijerph-20-05309\", \"B50-ijerph-20-05309\", \"B56-ijerph-20-05309\", \"B28-ijerph-20-05309\", \"B57-ijerph-20-05309\", \"B50-ijerph-20-05309\", \"B56-ijerph-20-05309\"], \"section\": \"2.5. Data Analysis\", \"text\": \"Data analysis involved reviewing, organizing, and coding mental notes, jottings, and study visit summaries relative to the theoretical frameworks and extant literature regarding PrEP initiation barriers. Specific experiences of PrEP barriers were highlighted, coded, and organized by hand using a pawing technique then prioritized for description [55]. Attitudes towards my role as the PCA were also coded, organized, and reviewed for salience. I grouped all such instances together from relative documents (i.e., journal entries, case report forms, jottings) and examined them for similarities and differences by each domain [54]. To optimize data collection, analysis, and the trustworthiness of the interpretation of this autoethnography, I also included a Black female qualitative research consultant with expertise in patient\\u2013clinician communication, experience studying sexual minority populations, and personal knowledge of the Baltimore City context. We met weekly to discuss multilevel experiences of my PrEP use, process feelings regarding working with Black GBM as an in-group researcher, and explore attitudes towards the research [50,56]. To ensure the accuracy and quality of data in recounting certain events and experiences, I shared my experiences, feelings, and notes with the consultant who affirmed some notes and challenged me to better describe more accurate versions of some of the stories [28,57]. We also discussed limitations and potential biases because my understanding of clinical protocols along with experiences of stigma, racism, and discrimination impacted my relationship to the research and participants. The iterative reflexive process allowed me to identify and address biases, mature my perspective regarding the study factors, and obtain high-quality autoethnographic data [50,56].\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B9-ijerph-20-05309\", \"B2-ijerph-20-05309\", \"B58-ijerph-20-05309\"], \"section\": \"2.7. PrEP Initiation & Adherence\", \"text\": \"I reinitiated PrEP (Descovy\\u00ae) at the end of 2019 in response to formative research and my team suggesting that I serve the intervention as the PCA [9] rather than using the project as a vehicle for professional and personal safety as I had done with research as a graduate student. I maintained daily adherence for approximately a year and a half until I ended a romantic relationship at the beginning of 2021. I had enough pills left over to use PrEP on-demand (2 doses the day before sex, 1 dose the day of, and 1 the day after [2,58]) if I anticipated having a casual partner (which did not happen during that season). PrEP became an intimate part of an emotional, psychological, and sexual defense mechanism that I was uncomfortable relying on given the salient experiences of stigma as a Black gay man and constant reminders of being a part of a highly vulnerable and marginalized group.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B26-ijerph-20-05309\", \"B54-ijerph-20-05309\"], \"section\": \"3. Results\", \"text\": \"Data presented describe the autoethnography of my role as a PrEP-using principal investigator and PCA in POSSIBLE by multilevel factors and salient professional challenges. Quotes from participants are provided to corroborate my personal assessments and make the text evocative by \\u201cshowing\\u201d thoughts, emotions, and actions [26,54]. Intervention effects will be described in a separate publication.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B59-ijerph-20-05309\"], \"section\": \"3.1. \\u201cHigh Risk Homosexual Behavior\\u201d: Navigating Stigma from Clinicians\", \"text\": \"I reinitiated PrEP at a primary care facility that was associated with a university hospital in Baltimore City. Even though I knew the HIV/STI screening guidelines, I always had an anxiety and fear of judgement as I anticipated the questions regarding my relationship status, partners\\u2019 gender, and sexual positioning practices (if clinicians asked at all). Clinical experiences were typically uncomfortable regardless of clinician demographic characteristics. The first provider I saw in Baltimore was a middle-aged white man who was unfamiliar with the PrEP treatment guidelines. I explained the guidelines to him to save both of us time, but he reviewed the Centers for Disease Control and Prevention website for confirmation before he agreed to fill the prescription. I was unsure if he was doing his due diligence as a clinician or if he did not believe me because I am Black. I was too uncomfortable with needing the prescription to ask. Although I did not have most of the PrEP indications (i.e., STI history, drug use, condomless sex), he said, \\u201cGiven that HIV is so high in your group, I think it\\u2019s a good idea. I don\\u2019t want you to get it\\u201d. By his tone, I was also unsure if he really cared about my health or if he was just reviewing my profile like I was a number. It was always difficult to decide if and when I should relax as a patient or assert myself as a nursing professor to protect myself from the stigma [59]. I always felt a power imbalance with clinicians and staff because I needed health care from them that did not allow me to fully express my discomfort with the experiences or ask for the treatment that I really wanted. Communicating with clinicians about sexuality and PrEP became another gut punch from the HIV bully and triggered feelings of shame about being a member of a \\u201chigh-risk\\u201d population.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B60-ijerph-20-05309\"], \"section\": \"4. Discussion\", \"text\": \"PrEP care and daily adherence reinforced an awareness of the salient multilevel challenges of Black GBM that triggered feelings of isolation, shame, stigma, internalized homonegativity, resentment, and treatment refusal. PrEP use also triggered medical mistrust and treatment hesitancy due to feeling medicated for being a member of multiple minority groups. Some GBM suggest that PrEP liberates them to participate safely and freely without fear of HIV [60]. Similarly, I found that PrEP reduced some concerns regarding HIV acquisition. However, the perceived benefits of using PrEP to prevent HIV did not outweigh persistent feelings of loneliness, resentment, stigma, and shame along with the challenges navigating barriers. Navigating multilevel PrEP barriers was ongoing and challenging with limited support. I needed to rely upon my identity as a health professor to help reduce inequitable feelings of shame, stigma, distress, and costliness as a PrEP-using PCA. Few aspects of the PrEP care process supported willingness, initiation, and adherence.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B61-ijerph-20-05309\", \"B62-ijerph-20-05309\", \"B63-ijerph-20-05309\", \"B64-ijerph-20-05309\", \"B10-ijerph-20-05309\", \"B59-ijerph-20-05309\", \"B63-ijerph-20-05309\"], \"section\": \"4. Discussion\", \"text\": \"Despite embracing an empowering community health agenda, this autoethnography reinforced the constant awareness of my multiple marginalized identities that persisted regardless of my self-efficacy or socio-economic status. W.E.B. Du Bois described a \\u201ctwoness\\u201d, a double consciousness that many Black people experience as they navigate life as racial minorities in America. The double consciousness refers to viewing oneself in the eyes of white people, an imposed self-awareness with competing ideals and goals as Black and American [61]. For Black GBM, this concept is germane to the clinical setting as we view ourselves through the eyes of primarily white clinicians in a socioecological context designed by white heterosexuals in service of white people. As Americans, some of us have access to quality healthcare. However, as Black men, the vulnerability to poor treatment from PrEP-prescribing clinicians (or any other social system in America) is inescapable [62,63,64]. Black GBM who have less awareness of screening protocols and less capacity to navigate and interpersonal dynamics with clinicians experience even greater unresolved barriers that must be eliminated [10,59,63].\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B65-ijerph-20-05309\", \"B59-ijerph-20-05309\", \"B59-ijerph-20-05309\", \"B65-ijerph-20-05309\"], \"section\": \"4. Discussion\", \"text\": \"I suggest that Black GBM experience a \\u201cthreeness\\u201d, an added identity as a sexual minority that could create a triple consciousness [65], exacerbate negative self-perceptions, and reduce health maintenance [59]. The threeness can refer to the competing ideals, goals, and worlds as Black, queer, and American [59,65]. While the twoness yields a double consciousness of identities due to Black race as Americans, the threeness exacerbates competing self-consciousness given an added sexual minority status. Specifically, identifying as gay or bisexual adds to the marginalization of Black GBM in the eyes of mostly white clinicians and social systems (including healthcare) that perpetuate stigma and isolation. Additionally, the challenges associated with navigating and developing romantic relationships are arguably unique for Black GBM given prevalent histories of trauma, isolation, and community HIV/STI risk, all of which can impact trust. This autoethnography highlighted my self-consciousness in the eyes of white clinicians but also of other Black and GBM individuals. I struggled to fully overcome multilevel PrEP/social barriers given my competing goals as a Black and gay and American professional man. I am uncertain if I ever can. Hopefully it is \\u201cpossible\\u201d.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B31-ijerph-20-05309\"], \"section\": \"4. Discussion\", \"text\": \"This study became a safe vehicle by which I could live in my hometown as an adult Black gay man vis-\\u00e0-vis my relationship with the men in POSSIBLE despite interpersonal, intrapersonal, administrative, and professional challenges. My age at the time influenced my clinical, professional, and social experiences given the context of navigating as a 20-something year old and changed my relationship to PrEP, my research, peers, and participants. Being the PCA could have saved someone\\u2019s life despite my challenges and reservations to serving in the role. Autoethnographic data analysis and writing helped heal intrapersonal challenges [31]. Consulting other researchers and participating in mental health services was crucial during this process. Sharing familiar experiences with peer-participants was also healing, hopefully in a bi-directional way.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B50-ijerph-20-05309\"], \"section\": \"Implications\", \"text\": \"PCAs require additional support from colleagues and supervisors to ensure their personal safety and professional identity. The emotional, financial, and psychological burden required from the role was not equitable. For example, navigating social and potentially romantic interactions with other Black GBM in this culturally congruent work is unique given the potential for same-sex attraction. The extreme homophily of the PCA in PrEP interventions among Black GBM could increase staff fatigue and turnover as well as affect recruitment, retention, and engagement depending upon the rapport with participants [50]. Research teams should ensure frequent (e.g., weekly) meetings with PCAs to assess their personal and professional wellbeing and consider having two staff members present in intervention meetings to increase support. Moreover, the salary for PCAs should be increased given the required experience, expertise, costs associated with PrEP care, and fees for recommended mental health services.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B66-ijerph-20-05309\", \"B67-ijerph-20-05309\"], \"section\": \"Implications\", \"text\": \"PrEP-prescribing clinicians and clinical support staff should be aware of the multilevel adversities that Black GBM experience prior to, during, and after clinical visits. Clinicians should ensure that they follow CDC guidance regarding open communication with patients and that they incorporate knowledge of multilevel challenges of Black GBM into their conversation to build rapport, alleviate stigma, and support PrEP adherence. For example, clinicians could proactively acknowledge and assuage patient concerns regarding sexuality discussions, PrEP and sexuality stigma, and extragenital screening protocols. Clinicians should also inform patients that PrEP use could trigger feelings of stigma and shame throughout the experience and affirm their decisions to demonstrate compassion and empathy. However, ICD-10 codes for clinical diagnoses and billing must be updated to more accurately describe the nature of clinical visits among GBM and reduce stigma. Trauma-informed care models integrate knowledge about patient histories into their policies, practices, and procedures regardless of the demographic composition of care teams and can improve treatment adherence [66,67]. \"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B15-ijerph-20-05309\", \"B24-ijerph-20-05309\", \"B68-ijerph-20-05309\", \"B69-ijerph-20-05309\", \"B70-ijerph-20-05309\", \"B9-ijerph-20-05309\", \"B15-ijerph-20-05309\", \"B15-ijerph-20-05309\", \"B15-ijerph-20-05309\", \"B24-ijerph-20-05309\"], \"section\": \"Implications\", \"text\": \"Additionally, clinical care teams could be a source of emotional and psychological support during and in-between visits to facilitate initiation and adherence among Black GBM [15,24]. Productive and familial-like patient communication can reduce stigma and increase patient treatment adherence [68,69,70]. Clinicians could also use PrEP to alleviate sexuality- and medication-based stigma and reduce medical mistrust [9,15]. PrEP provides a unique opportunity for patients to request that health professionals who do not have a disease to use and disclose experiences using a medication they recommend [15]. Unlike other chronic conditions such as cancer or hypertension, where medication is used for a present disease, it is reasonable for apprehensive patients to ask HIV-negative researchers and clinicians to use PrEP to help reduce medical mistrust and demonstrate their commitment to community health with Black GBM. Having clinicians who disclose their own PrEP use could create an equitable atmosphere with patients that removes barriers of race, gender, and sexual orientation. Black-led clinical care teams are considered more trustworthy than white clinicians and could also help improve adherence for Black GBM [15,24]. \"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B2-ijerph-20-05309\", \"B58-ijerph-20-05309\", \"B71-ijerph-20-05309\"], \"section\": \"Implications\", \"text\": \"This study is not without limitations. My professional expertise in sexual health coupled with previous PrEP experience provided support for my adherence that may not have occurred otherwise and impacted my participant interactions. I could not fully divorce myself from my role as principal investigator and professor, which impacted my PCA experience. I did not focus on alternative PrEP modalities such as on-demand PrEP or injectable Cabotegravir [2,58,71]. Also, it will be difficult if not impossible for other researchers (including myself) to replicate this study and experience similar findings given the age- and culturally- specific nature of this research.\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B72-ijerph-20-05309\"], \"section\": \"Implications\", \"text\": \"Future research should test the relative impact of the PCA on PrEP initiation among Black GBM. Larger efficacy trials are needed to identify the efficacy and equitability of leveraging in-group members as PCAs given the emotional and psychological burden that will be placed on research staff. Interventions should also identify and utilize PCAs with culturally acceptable characteristics beyond race and sexuality congruence that might be useful to Black GBM. Future research should also consider replicating the premise of this study using the newly approved PrEP injection for HIV prevention that only requires treatment once every two months and therefore inherently reduces exposure to some multilevel barriers [72].\"}, {\"pmc\": \"PMC10093874\", \"pmid\": \"\", \"reference_ids\": [\"B31-ijerph-20-05309\"], \"section\": \"5. Conclusions\", \"text\": \"Negative psychosocial experiences are salient along the life course of Black GBM and illuminated by PrEP. The PrEP care experience also triggered unresolved emotional and psychological factors as a minority American that are not adequately addressed by PrEP care or research teams. The cumulative role of trauma, stigma, homonegativity, PHR, and fear impacted clinical engagement and PrEP use and should be reconceptualized for Black GBM. I hope this autoethnography underscores how interrelated and salient multilevel factors are for us and how they impact, health behaviors, goals, and values. However, this autoethnography provided some healing by systematically studying, describing, and sharing [31]. I have hope that researchers and clinicians can find humanity in this work.\"}]"

Metadata

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