Becoming one with the community: a grounded theory-derived context-specific framework exploring AIDS service organization strategies for implementing pre-exposure prophylaxis outreach among African American populations

Abstract

Background

Although pre-exposure prophylaxis (PrEP) is a highly effective HIV prevention approach, uptake remains low among African American individuals within the United States (US). AIDS service organizations (ASOs) may foster effective PrEP outreach among this underserved population. However, strategies for engaging priority African American groups are limited. This study developed a context-specific framework for tailoring ASO-based PrEP outreach for African American high priority groups for HIV.

Methods

This study utilized constructivist grounded theory (CGT) rooted in symbolic interactionism and pragmatism. One-on-one, semi-structured interviews were conducted with key ASO informants in the US to explore the meanings ascribed to PrEP outreach and associated processes. CGT analytic principles, including line-by-line coding, focused coding, and theory building, were used to identify emerging themes and develop a framework grounded in successful outreach among African American priority groups.

Results

A total of 10 eligible participants from ASOs across six US cities were included in this study. Successful implementation of PrEP outreach with African American groups was described as a multi-phased, dynamic process termed “becoming one with the community.” This context-specific framework, grounded in participants’ lived experiences, involved three overlapping phases: (1) grappling with client and staff pushback and other challenges, (2) transforming these challenges into opportunities, and (3) establishing an authentic ASO presence within the community. The participants detailed key ASO strategies for building trust and ensuring culturally responsive PrEP outreach within African American priority groups.

Conclusion

ASOs are central to promoting PrEP engagement among high-priority African American populations. This context-specific framework can inform improved outreach efforts for other ASOs working with similar groups.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12913-025-13932-x.

Introduction

Disproportionately high rates of HIV occur among African American individuals, with 42% of new annual diagnoses in the United States (US) occurring among this population [1]. Pre-exposure prophylaxis (PrEP) is a highly effective FDA-approved HIV prevention approach for HIV-negative individuals with heightened HIV vulnerability [2–6]. Uptake disparities of this high-potency biomedical intervention remain. Specifically, African Americans account for just 11% of PrEP users [7]. A range of challenges impact PrEP uptake among this population, including low PrEP awareness, negative perception, and low perceived HIV vulnerability [8–13]. Poor access, stigma, conspiracy beliefs, medical mistrust, and provider preferences have also been shown to preclude PrEP engagement among African American groups [14–19]. For instance, in one study, despite African American populations being the most heavily impacted by HIV in the community of study, fewer African American men who have sex with men (MSM) compared to White MSM were being screened for PrEP [17]. Other studies also showed that African American men feel uncomfortable disclosing sexual behaviors to their providers [16] and are suspicious of PrEP due to mistrust and conspiracy beliefs [14, 19]. Additionally, while evidence shows that African American women are open to using PrEP, if recommended by their providers [18], African American women complained of not being informed about PrEP by their providers [19]. Thus, while PrEP may contribute towards slowing or ending the HIV epidemic, optimization of engagement and uptake in populations with the highest HIV vulnerability is needed [20].

AIDS service organizations (ASOs) who include community-based organizations (CBOs) and other local clinics providing HIV, AIDS, and PrEP services, can foster PrEP engagement for HIV prevention [12, 17]. Indeed, ASO-based services, including the provision of HIV testing, routine visits, and condoms, have previously been linked to heightened PrEP awareness [21]. Strategic ASO positioning also promotes engagement among those with limited access to clinics or hospitals [22]. Utilizing ASO facilities and services can enhance PrEP integration and scalability within existing programs [23]. Currently, however, few ASOs are adequately promoting PrEP among populations with high HIV acquisition chances [17, 24], with particularly poor outreach among African American priority groups such as men who have sex with men (MSM), women, and youth [17, 19].

Current ASO-based PrEP approaches may be limited and unsuitable for African American populations. Studies within a Southern US locale indicate that limited ability to reach African American priority populations and limited agency capacity are key challenges impacting effective ASO PrEP outreach in these populations [17, 19]. Furthermore, among 18-29-year-old African American priority groups, participants reported poor ASO presence within their community (communities comprised of predominantly African American residents) [19]. They indicated the need for more African American personnel or peers in priority groups employed by ASOs [19].

Strategies for tailoring PrEP engagement and outreach to African Americans are thus needed to promote PrEP uptake in this population. Theoretical frameworks or practice guidelines that outline strategies for effective ASO PrEP outreach toward African American populations are non-existent or inadequately studied. To fill this gap, this study developed a context-specific framework grounded in the successful implementation of ASO PrEP outreach among African American high-priority groups, utilizing Constructivist Grounded Theory (CGT) [25] to explore the meanings ascribed by ASOs to PrEP implementation and related processes. CGT was deemed suitable for this study given that CGT is most appropriate for understanding phenomena that are understudied, particularly social processes and interactions [25]. This context-specific framework is expected to serve as a strategic guide to boost ASO-led outreach efforts for successful PrEP implementation among African American priority groups.

Methods

Philosophical assumptions and interpretive framework

This study utilized CGT [25], a theory-methods package with philosophical underpinnings in symbolic interactionism (SI) [26] and pragmatism [27], which assumes a strong constructivist worldview [25, 28]. SI assumes that meanings and actions are formed and shaped by language and symbols and that actions and meanings are reciprocally related [25, 26]. Constructivism centers on the existence of multiple interpretations constructed through lived experiences and interpersonal interactions [28–30]. Meaning is thus co-constructed between the researcher and participant to allow the formation of emergent ideas [25, 28]. This study thus assumed that ASOs will approach PrEP implementation according to their ascribed meanings and interpretations, which may be impacted by personal experiences engaging with and providing PrEP outreach to African American priority groups. This approach was also used to determine the range of meanings held by participants. Research data derived from this approach formed the basis for developing a context-specific framework that describes the processes embedded within these social interactions. This community-informed and empirically grounded approach of actively engaging and centering the voices of ASOs as participants in co-constructing the context-specific framework can promote trust, create a sense of ownership, and increase buy-in from other ASOs. Thus, ASOs are likely to perceive the framework’s credibility and cultural responsiveness, increasing and expanding the framework’s potential to be adopted and implemented more sustainably with long-term impact.

Recruitment and sampling

Potential ASO participants were identified via (1) rigorous internet searches for US-based ASOs (e.g., CDC-funded ASOs and ASOs located in cities/states of interest), (2) ASO referrals, and (3) recommendations from ASO-associated academic collaborators. Priority cities/states included those with elevated HIV rates and ASOs with established HIV prevention infrastructure, including PrEP delivery and outreach: Atlanta, California, Chicago, Maryland, New York, Philadelphia, and Washington, DC. Eligible ASOs had: (1) an established and robust PrEP service delivery and outreach infrastructure; (2) prior successful establishment and implementation of PrEP-focused initiatives among African American communities; (3) current engagement in HIV-related PrEP outreach to African American high-priority groups; 4) ≥ 1 year of involvement in PrEP activities; 5) demonstratable client uptake; and 6) current engagement in PrEP education. Eligibility was assessed through a multi-phased screening process. First, ASO websites were visited to ascertain their use of HIV prevention services, including PrEP services and outreach. Second, ASOs were contacted via phone and/or email to verify their eligibility further. Those who did not conduct outreach to African American priority groups were excluded from participating in the study. Key informants (n = 10), defined as (1) representatives (in any capacity, not limited by age, role, or years of experience) responsible for PrEP outreach and/or delivery at the ASO and (2) knowledgeable enough about their ASO PrEP practices to satisfactorily answer questions relating to the six ASO eligibility criteria above, were identified from selected ASOs using purposive sampling to participate in this study [31, 32].

Data collection

Between October 2019 and March 2020, two rounds of semi-structured phone interviews were conducted with participants. The first was conducted with all participants (n = 10) using questions from the original interview guide (see supplementary material), and the second with a subset of participants (n = 6) using an additional set of questions to fulfill theoretical sampling/saturation and member checking [25]. The additional questions for round two were mainly to verify any time and sequencing between phases of the emerging framework, confirm if the framework was a dynamic and “ongoing” process, and to fill in any gaps. The interviews were conducted using a semi-structured interview guide developed for this study (see supplementary material). They were audio-recorded and lasted approximately 45 min. Interviews were not incentivized. The audio recordings were transcribed verbatim using a transcription service (Rev.com). The transcript data were deidentified prior to coding.

Data analysis

CGT analytic principles (line-by-line coding, focused coding, theory building, and memo writing) were used to identify themes and theories within the data [25]. Line-by-line coding was initially performed by two coders using gerunds. Initial codes were clustered and refined into the final codebook comprising frequent and significant focused codes [25], which was uploaded into Dedoose, a web-based qualitative analysis software [33], mainly for organizational purposes. Two coders independently applied the final codebook to two separate data subgroups (n = 4 transcripts and n = 3 transcripts, respectively, during focused coding) to ensure consistency in application, as measured by a kappa score. A 92% agreement was reached with a first Kappa test. Then, following discussions among coders, a 100% agreement was reached at the second test attempt, and the final codebook was applied to the complete data set during a second round of analysis.

Two researchers collaboratively compared focused codes at the axial analysis level and discussed relationships among emerging categories. Code matrices enabled comparison across and within cases to identify nuances and variations and to create descriptive categories and subcategories. Intercoder consistency was ensured by reaching a 100% agreement regarding finalized categories and sub-categories within each theme [25, 34]. Memos were captured throughout data collection and analyses to document emerging ideas. Through a series of successive analytic memos, a provisional thematic category comprising several codes was developed. Through successive sorting of analytic memos, diagramming, and comparisons of across- and within-case data, consensus was reached to elevate the provisional category to a final abstract category. This category was established as a process with several phases, each containing multiple subcategories and accompanying unique tasks (see examples in Table 2 in the Results section).

Table 2.

A dynamic process of ASO PrEP engagement and outreach with African Americans

	Phases
	I. Grappling with pushback/challenges	II. Transforming challenges into opportunities	III. Establishing authentic presence in community
Related tasks	Acknowledging, understanding types/origins of pushback and challenges	Devising strategies to deal with pushback and challenges	Building rapport and gaining trust with community
Transitions	Pressure from funders to meet goals; motivation to make an impact	Community buy-in	Diminished rapport and trust
Conditions	Transparency Relationships Resources (funding, capacity [e.g. personnel, educational and support services, decision-making power]) Interactions (client/community)
Factors impacting engagement/ outreach subcategories	Psychosocial and behavioral factors	Addressing psychosocial and behavioral factors	Understanding and prioritizing community needs and struggles (e.g. matching personnel to population characteristics)
	Cultural and Societal factors (e.g. cultural norms/ societal influences on HIV/PrEP, sexual norms and values, stigma, historical medical mistrust)	Addressing cultural/societal norms impacting HIV/PrEP	Being rooted in community (i.e., Meeting people where they are - avoiding oversaturation and overload of services)
	Systemic and structural issues (e.g., Cost/insurance, staff buy-in)	Addressing systemic and structural factors (e.g., cost/insurance, integrating PrEP organizational philosophy to elicit staff buy-in	Maximizing gatekeeper and ally connections

Theoretical sampling and theoretical saturation

The steps outlined in this section were intended for refining the emerging framework and testing assumptions with the participants once a provisional category was developed and a process was conceptualized to form the context-specific framework. Following process conceptualization, certain missing links in the process required exploration: (1) verification of whether the process was linear or dynamic; (2) verification of conditions and connections for transitioning between phases; (3) verification of temporal elements and sequencing of tasks associated with phases; and (4) explication of dimensions within some subcategories. Theoretical sampling was used to further explicate and saturate all categories and subcategories within the emerging framework [25, 28, 34, 35]. During the second round of interviews, ASO key informants verified phases, confirmed the framework was a dynamic and “ongoing” process, and provided missing links. Data collection and analysis were concurrent, and purposive sampling continued until all concepts of the developing theory were satisfied [25]. Theoretical saturation was reached with 16 interviews (10 first round; 6 second round). Code saturation (when a codebook is stable) [36], and meaning saturation (capturing all dimensions and nuances) [36], occurred by the seventh and 11th interviews, respectively, confirming the sample’s adequacy for analysis.

Positionality and reflexivity statement

As African American, cis-gender, bicultural female with advanced educational training, my culture, upbringing, and academic background shape a worldview that may be similar to yet differ from that of my participants. I studied chemistry and worked in the fields of biochemical and microbiology for over four years before transitioning to public health. My passion for preventing infectious and sexually transmitted diseases among persons of African descent led me to HIV research and outreach among African American communities. I am trained in qualitative and quantitative research and have worked extensively with African American communities.

As a health researcher who is part of a system mistrusted by African Americans, I sought to understand their culture and history, especially the unethical research practices that bred mistrust. I became certified to deliver HIV prevention instruction within a culturally relevant context and helped develop strategies for PrEP implementation. These personal and professional experiences inform my work.

As a human instrument in the study, I am aware that my background can undoubtedly influence my interactions with participants. Thus, I remained mindful of my own biases and avoided undue influence on participants’ responses or my interpretation of their responses. Although challenging, especially during a phone interview, I tried to remain neutral, minimizing value-laden responses, while staying present and engaged, without taking a stance on the issues discussed. To further ensure rigor, I used participant checking to validate my interpretations of the results and to confirm that participants’ thoughts were accurately represented in the researcher’s interpretation of the results to add credibility to the study.

Ethics

All participants were given a verbal preamble consent. They were informed that their responses would be anonymous and that confidentiality would be maintained. Interviews were audio recorded with the participants’ permission. They were not incentivized to participate in this study. The University of Louisville (redacted for blinded review) Institutional Review Board approved study protocols (IRB number 18.0020).

Results

Sample characteristics

Ten key informants from 10 separate ASOs participated in this study. Most participants were African American (80%), and the majority were male (60%) (Table 1). One ASO had been providing sexual health (including HIV) services for 30 + years, four ASOs for 20–30 years, two for 10–20 years, and one for < 10 years. The duration of PrEP services varied, with one ASO providing PrEP for > 6 years, five for 3–5 years, and four for < 3 years. All participating ASOs offered services to all demographics, and 20% had no specific primary priority population of focus (that is, ASOs did not mainly focus on one subgroup like MSM as their main priority population; they served all subgroups equally). MSM and transgender individuals were the primary priority population among 60% of ASOs, persons who inject drugs (PWIDs) among 30%, and heterosexual males among 10%. Percentages do not equal 100 due to overlap, as some ASOs prioritizing PWIDs also served other subgroups.

Table 1.

Sample characteristics

Characteristics	Participants (N = 10), N (%)
Participant Characteristics
Gender
Male	6 (70)
Female	2 (20)
Non-gender conforming	2 (10)
Race/ethnicity
African American	8 (80)
Hispanic	2 (20)
ASO Characteristics
Years providing HIV services
30 + years	1 (10)
20–30	5 (50)
10–20	2 (20)
< 10 years	2 (20)
Years providing PrEP services
1–3	4 (40)
3–5	5 (50)
6+	1 (10)
Location (City/State)
Los Angeles, California	2 (20)
Chicago, Illinois	2 (20)
Houston, Texas	2 (20)
Dallas, Texas	1 (10)
Atlanta, Georgia	1 (10)
Largo, Maryland	1 (10)
Philadelphia, Pennsylvania	1 (10)
Primary Population of Focus (Client)*
No specific priority population	2 (20)
MSM and some transgender mainly	4 (40)
MSM and some transgender mainly	2 (20)
Heterosexual men mainly	1 (10)
Some PWID	3 (30)
PrEP Service Type
Non-clinical	7 (70)
Clinical	3 (30)

ASO: AIDS service organizations; HIV: human immunodeficiency virus; MSM: men who have sex with men; PrEP: Pre-exposure prophylaxis, PWID: persons who inject drugs. *non-exclusive as some participants had > 1 primary priority population

Context-specific framework for ASO PrEP outreach with African American individuals

Participants described strategies and articulated processes involved in successfully conducting outreach with African American priority groups. Their responses indicated an abstract dynamic process, “becoming one with the community,” involving various phases and stages as well as conditions for achieving success with PrEP engagement and outreach among African Americans (Table 2).

Participants articulated the process of “becoming one with the community” as a major precursor to successfully implementing PrEP outreach within African American communities (Fig. 1). This context-specific framework for PrEP outreach was grounded in the voices and lived experiences of participants. The process involved three phases, each with corresponding tasks: (1) grappling with pushback and challenges, (2) transforming challenges into opportunities, and (3) establishing authentic presence within the community. It should be noted that phases are not necessarily rigid. There is some overlap between phases.

Fig. 1.

A Dynamic process/context specific framework for ASO successful PrEP Implementation with African Americans

Phase I. Grappling with pushback and challenges

Participants indicated meaningful interactions with African American clients are required to ensure successful PrEP engagement, although this often begins with an initial period of pushback and challenges. Phase I thus involved determining the interplay of multiple factors that precluded PrEP engagement and outreach, aiming to promote “becoming one with the community” and providing a starting point for ASOs to address the root causes of these challenges. Pushback and challenges arose both from clients and ASO staff. Impacting factors were grouped thematically as (1) psychosocial and behavioral factors, (2) cultural and societal factors, and (3) systemic and structural factors.

Psychosocial and behavioral factors

Participants described the interplay and influence of client intrapersonal and interpersonal factors upon PrEP engagement and outreach, such as gender- and sexual orientation-based factors, which promoted pervasive PrEP misinformation and engendered inappropriate PrEP use. African American heterosexual men, for example, were reported to use PrEP “like birth control” as an alternative to condoms and demonstrated lower HIV vulnerability perception and higher prevention engagement resistance compared with women. In contrast, African American men who identified as heterosexual but engaged in sexual intercourse with men reportedly refrained from PrEP use due to concerns of retribution from their significant others. The denial of HIV vulnerability and an endorsement of misinformation were thus highlighted as pertinent intervention focus areas within the African American community:

A lot of the communities, individuals are in denial, or they’re misinformed … we’re still dispelling myths that … ‘There is a cure for HIV because Magic Johnson got cured.’ That’s not true. That’s misinformation. Or the other one being only people that are very, very high-risk people … People that are being whoremongers, are at risk of HIV. Just because I’m with one person, I’m not a risk… —P10_Largo, MD

Cultural and societal factors

Participants emphasized the importance of historical medical mistrust, homophobia, and sexual taboos in the African American community. The greatest pushback to PrEP was rooted in historical unethical treatment of African Americans within research, continued societal and systematic healthcare inequities, and medical mistrust. Many African American clients were unwilling to use PrEP due to fears regarding potential side effects and long-term effects, borne from a mistrust of the healthcare system. One participant remarked:

… for populations that have a mistrust of the medical system, have a mistrust of chemicals, have a mistrust of, or an inexperience of utilizing medication on a daily basis, it’s a transition for them to move from the state of readiness. The state of, ‘I’m thinking about it, this might be an option for me,’ to, ‘Oh, I can commit to this.’—P3_Chicago, IL

Stigma was also a prevalent barrier to PrEP engagement. Stigmas associated with homosexuality were common due to anticipated judgment or shame from clients’ referents. HIV-related stigma also occurred due to judgmental attitudes towards individuals with HIV, while PrEP-related stigma arose through fears of judgment for taking an HIV-associated pill. Certain participants indicated that that HIV-based stigma was especially prominent in the southern regions of the US and was a “continuous battle” for promoting engagement with HIV-related promotion as clients felt that PrEP engagement may be targeted towards them based on their assumed sexuality.

Systemic and structural factors

Systemic and structural barriers impacting PrEP implementation included cost and organizational factors. Cost-related barriers included limited affordability due to the lack of insurance and the low socioeconomic status of many African American clients. Most participants dealt with homeless populations whose “hierarchical need of survival” did not prioritize insurance or PrEP engagement. Organizational barriers included PrEP pushback from ASO staff members while preparing for the transition to a biomedical prevention model. Although ASO staff often understood the efficacy and importance of PrEP, this pushback involved difficulties shifting from a behavioral intervention to a biomedical model of PrEP engagement:

I feel like the difficulty with biomedical intervention as the only option, is that it is somewhat force-feeding a pill on a population, and it’s taking out the fact that there is a lot more work that goes into just taking a pill every day … if you take out that behavioral aspect of it, you’re really missing the primary focus of why that client is there. — P3_Chicago, IL

Importantly, many ASO representatives are African American and may share specific experiences with the African American client community.

Phase II. Transforming challenges into opportunities

Phase II was characterized by identifying strategies employed by participants to navigate and overcome barriers to PrEP outreach and service delivery encountered during Phase I.

Addressing psychosocial and behavioral factors

Participants considered education to be a foundation for addressing intrapersonal factors that contribute to pushback within African American communities. Strategies for educating and “re-educating” were used to address the low perceived need for PrEP and the prevalent misinformation. Persistent engagement through conversation and education sessions effectively improved perception of HIV vulnerability and willingness to use PrEP among clients who were unaware or skeptical about side effects. Participants indicated that consistent education was necessary to normalize HIV and engender change within the individuals and the community. Education also allowed clients to recognize their HIV acquisition chances and transition to accepting PrEP as an HIV prevention option:

“For the individuals who’ve never heard about it [PrEP] before, they are really skeptical … After a few conversations, you could see them turn around and says, okay, here are my risk factors and as a result of my risk factors, that maybe I do or maybe I should give it a try. … the willingness is increased after multiple sessions involving education. ”— P10_Largo, Maryland.

Addressing cultural and societal factors

Participants responded to issues regarding racism, segregation, discrimination, and stigma in the community by (1) acknowledging the existence and impact of these issues and (2) encouraging systems to address these issues. To combat HIV stigmatization, participants engaged in activities that normalize HIV and PrEP among sexual minorities, such as presenting information using carefully considered appropriate language (e.g., outreach names and taglines used). Recognizing the stigmatization of HIV within areas of the African American community, certain ASOs also place a focus on providing “whole health” by removing HIV from health promotion materials and providing sexual health services with other services (e.g., blood pressure screening). Participants also recognized inadequate HIV and sexual health information as a barrier to PrEP engagement among African Americans. At the same time, misinformation and low PrEP awareness may further contribute to stigmatizing HIV and PrEP views. Thus, consistent education was considered an important strategy for changing cultural and societal norms:

Addressing systemic and structural factors

To address cost-related barriers, participants promoted PrEP access through the utilization of medication assistance programs (MAPs) to overcome affordability barriers among uninsured clients. Where possible, participants expedited the MAP application process to improve client experiences and reduce unnecessary burdens. As described by one participant:

…Most of the patients that we see are uninsured, and so we have to use patient assistance programs to get their medication covered … I do a lot of my own patient assistance program application works so that I can help expedite that, so that the patient isn’t waiting on us. And then once the application is approved and they get the numbers from them and then they take it to the pharmacy and then they provide the pharmacy with the numbers that they get so that they can then have their medication covered. So that in itself is a barrier because all those extra steps and all that type of stuff is something that would prevent somebody from taking that on. — P6_Dallas, TX

Agency-wide staff buy-in and understanding were also considered crucial for effective PrEP implementation and to prevent missed opportunities due to misunderstanding the ASO’s mission. Participants emphasized that adequate staff PrEP education and training were necessary to decrease staff biases and ensure that all staff members were “on board” with offering PrEP within the community. Participants thus chose to highlight ASO PrEP goals during the hiring process to ensure that agency buy-in is achieved before commencing education and promotion. All agency personnel required training and an understanding of ASO PrEP goals to ensure staff biases did not influence client experience. Equal importance was given to training PrEP outreach personnel and providing basic PrEP-based information to remaining agency staff members:

… have a conversation with the people that are going to be making the referrals, about any biases that they may have. Have that conversation because the same biases that the staff members have, some of the people that they engage are going to have those and you want to be able to respond to that in a proper, properly…And that’s from our peer specialists, all the way to our managers, supervisors… — P2_Atlanta, GA

Phase III. Establishing an authentic presence within the community

Community buy-in was imperative for ensuring considerable and sustained PrEP service delivery. Phase III thus involved establishing an authentic presence within the community by building rapport and trust. Participants employed various methods for engendering community support and were grouped into three subcategories: (1) understanding and prioritizing community needs and struggles, (2) being rooted in community, and (3) maximizing gatekeeper and ally connections (Fig. 1). Higher participant engagement with the phase III tasks led to heightened successful engagement and outreach.

Understanding and prioritizing community needs and struggles

Participants indicated that building rapport and trust within the African American community required ASOs to demonstrate care without exploitation of their clients. This was achieved through prioritization of community needs and struggles by (1) ensuring clients felt comfortable and open to conversation and (2) adequately understanding client needs (e.g., client priorities, tangible and appropriate incentives [food, clothing, gift cards]). These considerations were important before PrEP engagement, as many priority populations have competing needs that are given higher priority. Many prioritize survival and require food, shelter, and insurance help. It is thus imperative to first meet these needs before the client can engage with ASO sexual health services. One participant narrated their experience:

Clients primarily come seeking services for one of the other reasons [food, etc.]… And then we engage them with preventative services in addition to the services that they’re already getting… And so our primary mode of engagement is the other barriers to service that are a higher priority on a client’s list. We work with a very hard-to-reach population. Primarily Black and Hispanic MSM and Trans-Black and Hispanic individuals. And when engaging with these populations, if you start the conversation with HIV test, they lose interest… — P3_Chicago, IL

Participants also noted the need for sensitivity towards engagement preferences to improve ASO client relationships. Specific individuals, for example, may prefer to be approached privately:

… I didn’t understand the concept of, ‘Maybe someone doesn’t want to be outed at school,’ like I said. I was going to school thinking I was going to get this huge outpouring. I was going to go to the LGBT groups on campus and meet all these cool people, and it wasn’t like that because A) people don’t want to be outed as gay, and then B) they see me walking around with a red HIV shirt on and they don’t want to be associated with it. So that was an instance of me not knowing the client very well and maybe not planning as well as I could have for an event like that … It’s very important to just know your clients and plan accordingly.—P8_Los Angeles, CA

Sensitivity to the client’s background and experiences, such as gender or sexual orientation, may also influence the client’s engagement with PrEP. The standpoint of a heterosexual African American male, for example, may contrast substantially with that of a heterosexual African American woman, as their differing experiences will have shaped their thoughts, beliefs, and misconceptions. Participants also emphasized the importance of “meeting people where they are” through non-traditional efforts, such as using a mobile van and a “rapid model,” to reach clients without access to services, decrease barriers, and increase successful PrEP uptake. Additionally, participants indicated that African American clients were more likely to trust staff members who represented their community. Ensuring that outreach personnel represented the priority population by hiring from the African American community helped “build more rapport and trust in the community” and ensure that “anxiety around research is not so prevalent.” Participants, however, expressed caution as this strategy could be perceived as a predatory tactic, whereby personnel from the African American community are hired only to ensure the ASO meets grant goals:

Government funds like [federal and local government grants] or any of them, when they fund cooperate, or they fund these agencies, they target a population, they say you need to reach 2000 Black MSM individuals, right…Now, to reach 2000 Black MSM, what do the community-based organization have to do? They have to hire people of community to reach out to people of community … So, the effectiveness shifts from, ‘I want to make a difference, I want to reach these people’ to, ‘oh…, I need to reach 2000 people before the end of the year’. And when that mentality shifts, the quality of those engagements diminishes. And this is historical. Throughout time, people in these communities have come to realize that these organizations are only using them to complete their numbers so they can maintain grants. — P3_Chicago, IL

Participants suggested that ASOs should invest in the community beyond the entry-level community training typically provided and that hiring community members for positions beyond entry-level was important. When unable to create representative outreach personnel teams, team diversity remained pivotal. Thus, team members who possessed other community-relatable qualities were included.

Being rooted in community

Participants were required to establish the ASO’s presence to become rooted in the community, rather than waiting for community members to approach the ASO, a key strategy employed was “meeting people where they are” by extending outreach efforts to physical spaces (e.g., the streets, clubs, bars, barbershops) while using non-traditional outreach methods (e.g., social media, mobile vans). Participants emphasized that meeting in spaces where individuals felt comfortable demonstrated care for the clients and contributed to building rapport. One participant stated:

…We do go out in the community to drug and sex trade areas, and we have, on our mobile unit, packs of cookies, or juices, or whatever…And oftentimes, people that come to us to get tested, haven’t had a meal in a few days. So, we want to make sure that we’re removing some of those barriers. And in the hopes of removing those barriers, and really providing comfort, we’re building that rapport. — P7_Philadelphia, PA

“Showing up in spaces where young people are,” such as virtual social media or web-based spaces also contributed to building rapport. One participant indicated significant success using Snapchat and Instagram to increase attendance at associated “Empowerment groups” by maintaining a strong daily presence.

Being rooted in the community also required maintaining a community presence. Consistently attending community events allowed ASOs to develop a “stronger visual presence,” which was recognized in the community and increased the willingness to engage during subsequent visits. This practice successfully improved trust and removed stigma barriers that impacted many African American communities, allowing participants to reach many who would not have acknowledged ASOs otherwise. Participants also indicated that community-based event outreach was particularly effective compared with general outreach, as it led to greater numbers of individuals commencing PrEP (especially youth). Further, community mobilization around PrEP through ASO-hosted events within the community successfully drew community attention to PrEP and HIV prevention:

I do think there is needed mobilization in the community … we [interviewed ASO] hosted the first ever PrEP Week … And so, on July 15th, or the 16th, the FDA approved Truvada for PrEP. And what we did was, we made it a week-long celebration, and we brought together people from all over the Tri-State area, we brought a news media. We had a great host. We did several different events, to create awareness around PrEP. And as a result of that, we were able to have 40 new PrEP starts that week, and re-engage 20, those who are on PrEP, or lost to care. — P7_Philadelphia, PA

Participants also demonstrated oneness with the community by utilizing an open-door policy. Community members could approach the ASO space at any time for assistance with health and non-health-related needs, such as guidance on resumes and job applications.

Well, because we are active in the community and the people do see us, they see our logo, they see us. Like back to school, we give out backpacks, school supplies … people get really excited because they know that we’re bringing something good to the community and they look forward to seeing us, actually … And we have a drop in Wednesday, where they can come in and use our computers and we help them with their resumes and anything else that we can help them with. And so I think just having our doors open, being welcoming and being visible, we have found much success in that approach … they can come into your office at any time and get services and get other incentives, if they need bus tokens, anything like that. So, I think just being one with the community and being visible. — P9_LosAngeles

Finally, emphasis was placed on fostering collaborative partnerships with other organizations in the community to avoid duplicating or oversaturating services as “hard promotion” may be off-putting.

Maximizing gate keepers and ally connections

Gatekeepers and allies were considered entry points or liaisons into the community. Gatekeepers were identified from peer group leaders, community leaders, existing clients or non-clients who are community members, and community advisory boards (CAB). Allies were any other community organizations with whom ASOs collaborated for PrEP engagement. To improve community connection and insight, ASOs identified and established trust with gatekeepers and allies. Certain ASOs had existing programs from which they could locate gatekeepers. Others solicited gatekeepers in the community through advertisements for volunteer gatekeepers with attached participation incentives. CABs, for instance, comprised community members mainly selected from priority populations. Peer-oriented “social network strategy” was also instrumental in connecting ASOs with priority populations through peer referral from allies within the community:

… it allows us to have intimate conversations with small groups that will allow us to create a more intimate setting, and people are more open in intimate settings. The allies identified a lot using basically their interests … if we come across like a new positive during that conversation, that rapport that’s being established, it often comes out if they have a cluster of peers who may be at high risk, who wouldn’t mind engaging in such conversations. — P10_Largo, MD

Less formal referral strategies were also reported in which peer group leaders were identified within community priority groups and then brought their peers. This allowed participants to reach community members who would have otherwise been missed, as they are more likely to listen to their peers than to researchers. Another strategy for identifying allies was searching the internet to locate popular opinion leaders (e.g., DJs, promoters, popular club or bar hosts) within the community. Finally, participants recommended identifying allies by scouting the community for opportunities to build collaborative partnerships with existing organizations that shared a common goal of improving the community (e.g., churches and places of worship).

ASOs relied on gatekeepers and allies to provide insight into community preferences and expectations, including receiving feedback (through a feedback loop), community referrals, and gaining access to peer social and sexual networks. Participants indicated that the selected gatekeepers should be trusted even when the information shared seemed to be contrary to their understanding:

…Listen, that’s the biggest thing, is listen to their opinions. When I first go to CAB and they told me to do Footlocker incentives, I was like, ‘Footlocker? $25 for Footlocker aint crap. You ain’t going to get a pair of shoes for $25 at Footlocker.’ But because of the recommendation, we did the $25 Footlocker gift card, and then all of a sudden there was a million people knocking on their door wanting the Footlocker incentive. I had no faith, and I was like, ‘That’s crazy. It’s $25 for Footlocker,’ … So, even if the idea sound weird or don’t seem logical to you, try it out … the majority of what they’ve told me, has worked out well. —P3_Chicago, IL

Participants also relied on advice from the CAB to identify “sacred places” and “hot spots,” ensuring the ASOs did not encroach on community privacy. One participant, for example, learned it was unacceptable to conduct outreach in locations in which transgender individuals practiced sex work in a community familiar to the participant. They stated:

We also bring them [CAB] to the table, to tell us where the hot spots are. And so, sometimes, we as researchers may feel, that we need to go to XYZ place, not understanding that those places are a sacred place. So I used, for example, just not too long ago, I was talking about trans work sex work, in an area that is very familiar here in Philadelphia. And so, yes, we have access to that area, and we know that sex work happens in that area. But from our Community Advisory Board, we’re probably not going to make the most connections in that area, because you’re infringing upon a person’s workplace… — P7_Philadelphia, PA

To address gatekeeper skepticism, earn their trust, and motivate them to connect the ASOs with their community, participants recommended transparency, honesty, and accountability about agency goals (e.g., HIV testing goals, number of PrEP referrals per year, etc.), the community’s role in reaching those goals, and the agency’s capacity to honor gatekeeper recommendations. This strategy helped to disabuse community members of their opinions and dispel negative perceptions that ASOs were in the community to exploit individuals in order to meet agency goals. One participant stated:

…a lot of pushback from communities about grants and programs like mine is that it tends to feel as if we use the community for a number and then stop. So, when I do meet with CAB members, I’m 100% transparent with grant scopes, grant numbers, and then what our intentions are. You know, my grant scopes may be test 3000 people, link 300 people to PrEP and diagnose 32 new positives. But I don’t do outreach with the idea of 3000 tests, 300 you know, PrEP and 32 positives. I go out there with ‘how do I make a difference in this community? How do I engage this community?’ And I really take a step back and I let them speak … I think that’s what helps me build relationships and build trust within the community is that I truly do my best to listen to them … when they said, ‘Oh, we should have Footlocker gift cards for $50’. I’m transparent. I’m not going to say that’s a good idea and move on. I’m going to say, no, we can’t afford that. This is our budget. Let’s talk about within the budget… — P3-RT_Chicago, IL

Overall, participants demonstrated that establishing an authentic presence within the community required an understanding and prioritization of community needs, being rooted within the community, and maximizing gatekeepers and all connections. Community gatekeepers and allies provided a strong bridge between the ASO and the community. This process enabled them to shift power to the community.

Discussion

ASOs play a vital role in PrEP-based HIV prevention as they are well-positioned to reach vulnerable communities through education, engagement, and evidence-based interventions (EBIs) [37]. Yet, practice guidelines detailing effective ASO PrEP outreach toward African American populations are non-existent or inadequately studied. This study, therefore, developed a context-specific framework, informed by the lived experiences of ASO representatives, for tailoring intervention strategies to reach African American populations with PrEP-based HIV prevention. Throughout, participants highlighted factors impacting PrEP outreach including co-existing and interacting interpersonal, social, economic, and cultural factors. Our three phased framework thus incorporated a multi-level approach consistent with evidence that such models are key for effective long-term behavior change and HIV prevention [38–42]. Tenets of our framework imply actionable strategies for ASOs working to improve PrEP implementation and uptake with African Americans with high HIV vulnerability. These include practice implications across all phases.

Phase I

Phase I focused on discerning client pushback and challenges impacting PrEP engagement and outreach among high-priority African American individuals [43]. Consistent with published findings, influencing factors at the individual level included knowledge, awareness, attitudes, perceptions, fears, and beliefs about HIV and PrEP [11, 12, 15]. including resistance from staff members due to personal beliefs regarding the prevention approach [44]. Additionalbarriers noted in Phase I were stigma, perceived racism, systemic healthcare/medical mistrust, and socioeconomic status-related [14–18, 45, 46].

Given these findings, ASOs must engage in ongoing development of non-stigmatizing community messaging [47, 48] and directly acknowledge historical mistrust of health care-related interventions [49, 50]. Intentional responsiveness should include providing culturally- and trauma informed trainings for ASO staff to reduce harm, facilitate shared values, and ensure the buy-in critical to successful implementation of HIV prevention interventions [51].

Moreover, this phase indicates the importance of training for healthcare providers across the HIV service delivery continuum. Such efforts should understand organizationally and professionally situated beliefs and experiences [52], while also explicitly confronting issues that influence hesitation to discuss PrEP with clients [53]. For example, research suggests that providers may differ in their likeliness to discuss PrEP with clients based on sexual and racial biases and prejudice, their own sexual minority and racial congruity with clients, as well as assumptions about risk, eligibility, and adherence [54–56].

While these efforts play a role in long-term de-stigmatization and reduction in untrustworthy behaviors, in the short-term, these goals may also be facilitated through networking with health professionals already perceived as trustworthy. For example, strategic outreach could engage professionals matriculating from Historically Black Colleges and Universities [47]. For all providers, training development should include increasing depths of information and reflective praxis through case-based scenarios and interactive platforms like role-playing to interactive platforms to increase understanding of and comfort with culturally informed client discussions [57].

Phase II

Transitioning into Phase II allowed participants to devise strategies to overcome these challenges and promote ASO grant goals. Many participants utilized status-quo approaches, such as existing sexual health education and HIV prevention programs for client-related challenges. Incentivized HIV testing, for example, increased PrEP referrals, while EBI workshops increased client HIV and PrEP awareness. These strategies also demonstrated the ASO’s role in the PrEP care system as delineated by the CDC: promotion and education; engagement, identification, recruitment, and EBIs supporting PrEP uptake; navigation; and directories of health and prevention services [37].

Noteworthy was participants’ insistence on the value of conversational approaches to client engagement in services. This may indicate potential for more flexible but research informed protocols for facilitating personalized conversations emphasizing individual motivations and circumstances [48, 58, 59]; this may also include training in and implementation of formal Motivational Interviewing techniques [60].

There is also a promising role of peer led interventions as supported by associations between perceived peer PrEP use and client PrEP use [61, 62]. Other evaluations indicate peer models hold promising results for improving perceived risks for HIV and acceptance of PrEP care referral [60]. Similarly, receptivity to ASO outreach and services can be enhanced through prioritizing integration of individuals with shared lived experiences as service providers; particularly those that reflect the diversity of the clients and community [56, 63–65].

Finally, Phase II involved keeping an open-door policy for community members to access the ASO beyond strictly PrEP or HIV/AIDS specific services. Providers also described assisting clients with navigating cost barriers to PrEP and other support services. These efforts give insight to potential needs for enhanced assessment and intake procedures, alongside collaborations across expanded referral networks. Therefore, strategies within this phase embed ASOs within a broader service array and suggest potential for leveraging collaborative partnerships with other community-based organizations to expand and strengthen interorganizational referral networks and multi-sited service integration processes [66]. At the same time, an emerging concern is task shifting across organizations and the resource implications for partner organizations [67].

Phase III

The highest level of success was reported while utilizing phase III to establish a meaningful, respectful, and transparent community presence. Through prioritizing community needs, rooting the ASO in the community, and maximizing gatekeeper and ally connections, ASOs tangibly increased the number of individuals following through with PrEP referrals. Indeed, the intensity of pushback and challenges drastically decreased during this phase.

Integrating findings from this phase with existing research, authentic engagement requires openness to learning about the community and its self-identified needs and goals, and prioritizing community vs. organizational drivers. This means ongoing attention to co-created and culturally anchored interventions [68]. These should be locally tailored to respond to evolving political and cultural contexts; including community readiness [69]; such as those exploring unique intersecting factors that limit PrEP uptake in the Southern U.S [70]. This requires trusting and the emic perspectives of community feedback loops and genuine power sharing, particularly among prominent allies and gatekeepers. This phase also emphasizes the importance of meeting clients where they’re at. As such, this supports ongoing efforts to develop accessible and acceptable alternative provision mechanisms like mobile, telehealth, and digital interventions that may reduce access barriers and limit exposure to stigmatizing environments [71].

At the same time, establishing an authentic community presence requires considerable financial commitment. The ability of ASOs to meet community needs is restricted by available funding, which may not always accommodate the expenditure required for comprehensive PrEP implementation [44]. For instance, funding availability may impact the agency’s capacity to provide adequate outreach personnel, outreach personnel decision-making power, educational/other support services, or connections to other support services. Thus a key advocacy priority is to urge funding organizations and policymakers to enhance dedicated financial support for HIV care, prevention services, and outreach that include PrEP [72]. Presently, “CDC funding is limited to screening for PrEP eligibility, linkage to PrEP services, support for PrEP adherence, and increasing consumer and provider knowledge of PrEP” [73]. ASOs are thus hindered by a paucity of PrEP dedicated federal funds to expand these more relationally and culturally embedded community outreach efforts.

Strengths and limitations

The strengths of this study include the inclusion of CDC-funded ASOs, which had previously been subjected to a rigorous federal grant funding application process that emphasized demonstrated client uptake. This study is also associated with certain limitations. Using purposive sampling may introduce researcher selection bias, although this was minimized through clearly defined inclusion/exclusion criteria and selection informed by research purpose and questions [30]. Additionally, participants self-reported their success with implementation of PrEP, thus, social desirability bias may have impacted their response, although this was minimized via phone interviews rather than focus groups in which participants may have influenced each other. Finally, this study examined use of oral PrEP, and data were captured before the widespread availability of long-acting injectable PrEP. Nevertheless, data are still relevant as oral PrEP remains the modality of greatest access.

Future research

Overall, future research should prioritize practical, realistic, situationally grounded, and client centered principles and impacts across the continuum of HIV care [74]. For example, although noted as promising practices, there is a need for continued evaluation of digital, mobile, and telehealth services and their relationship to PrEP uptake among African American communities, such as those in the South [63, 75]. More understanding is also needed about the experiences and perspectives of gatekeepers, allies, and partner organizations in terms of emerging practices; particularly with respect to ensuring mutual trust and benefit.

Participatory and implementation science-based research paired with effectiveness designs would be particularly important for understanding the context-specific structural and systemic barriers for clients and organizations applying lessons learned from this framework [56, 64, 76–78]. In concert, this evidence should contribute to the development of comprehensive national-level guidelines for effectively implementing culturally tailored PrEP engagement and outreach with populations with the highest HIV vulnerability, including African American priority groups [44].

Moreover, employing implementation science approaches and frameworks can assist ASOs in the rigorous application of this study’s findings within future interventions. For example, ASOs may wish to integrate proven-effective outreach strategies in PrEP-focused interventions while also being attentive to how this integration is realized within aspects of the RE-AIM (Reach, Efficacy, Adoption, Implementation, Maintenance) framework [79, 80]. This may help ensure (1) proper attention to intervention processes; (2) appropriate monitoring to ensure intervention fidelity; and (3) documentation of intervention components that facilitate PrEP uptake and maintenance. Furthermore, the Consolidated Framework for Implementation Research (CFIR), which emphasizes the organizational and structural context, has utility in informing the delivery of effective interventions for ASOs focused on PrEP [81].

Conclusion

ASOs play a vital role in promoting PrEP uptake among African American communities. This study addresses the dearth of exemplary strategies to guide ASO PrEP efforts by developing a context-specific framework for implementing PrEP engagement and outreach with African American priority groups. Findings from this study of a national sample of ASOs demonstrate the promise of this framework for successfully enhancing PrEP implementation among African American priority groups. The resulting multi-phased framework offers expanded guidance for future practice, policy and research, with potential transferability to populations beyond African American communities.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

All authors were involved in the this manuscript. SDA conducted the investigation, the data analysis, and prepared the initial draft. JSS assisted with data analysis and manuscript revisions. LMH recommended the data analysis method, contributed to the content, and edited all drafts. RMC contributed revisions to multiple versions. KP served as a mentor to SDA and reviewed versions of the manuscript.

Funding

This study was funded by the Jewish Heritage Fund for Excellence.

Data availability

Due to the sensitive nature of the topic and the detailed content of participant responses that could potentially reveal participant’s identities in their respective local areas, the datasets used and/or analyzed in this study are not publicly available. Nonetheless, they can be made available upon reasonable request by reaching out to the corresponding author, SDA.

Declarations

Ethics approval and consent to participate

We adhered to and conducted this research study in accordance with the Declaration of Helsinki. All participants were read and agreed to a verbal preamble consent. They were informed that their responses would be anonymous, and that confidentiality would be maintained. Interviews were audio recorded with the participants’ permission. They were not incentivized to participate in this study. The University of Louisville’s Institutional Review Board approved study protocols (IRB number 18.0020).

Consent for publication

NA.

Competing interests

SDA received consulting fees from Gilead. KAP received consulting fees and grant funding from Gilead. JCK received consulting fees from Gilead. All other authors declare no competing interests.