Study setting, academic-community partnership, and positionality

This study was conducted by researchers at the University of Washington in partnership with leaders and health organizations from the local Ethiopian, Somali, and Eritrean communities. The research team was composed of the academic researchers, study staff, and community partners, with most individuals belonging to one of the three communities.

Given that our work involves individuals for whom English is not their first language, we use “preferred language” as the language an individual is most comfortable using, [20]. We consider “dominant language” to refer to English as the language that immigrants to the U.S. must assimilate into to satisfactorily navigate spaces in the U.S., such as healthcare settings [21]. Our use of “dominant language” conveys the power dynamics that are often at play for those who feel disadvantaged by English not being their preferred language. We avoid the use of “limited English proficiency” as it frames non-English preference from a deficit perspective. By making these distinctions we aim to capture these complexities of different languages, often used by the same individual in different settings, and the power structures that exist in a multilingual society.

Sampling

Participants for both KIIs and FGDs were selected using purposeful sampling with input from community partners to determine recruitment methods and potential participants. To conduct KIIs we sought out healthcare professionals, persons living with HIV (PLWH), and religious and other leaders from East African immigrant communities. To recruit PLWH we used provider referrals from case management organizations and the UW-affiliated HIV clinic at the county hospital. Our recruitment period for the KIIs started on September 2, 2019, and continued until December 20, 2019.

Our initial KII data analysis showed that any HIV-related stigma reduction intervention should include religious leaders and institutions, leading us to heavily sample from these groups for the subsequent FGDs, but we also included other community leaders and members in FGD. We recruited participants for the FGDs over a two-month period, from January 1 to February 28, 2020. We did not attempt to intentionally recruit PLWH for the FGDs in order to minimize the possibility of inadvertent disclosure and/or traumatizing conversations. The demographic data collected was age, gender, country of birth, occupation, and religious affiliation. Sampling numbers were guided by theme saturation within participant categories.

Interviewers and facilitators

KII interviewers and FGD facilitators were selected by community partners from their respective communities. Each selected interviewer/facilitator was bi- or trilingual (of two or more of the following languages: English, Amharic, Tigrinya, Somali, or Kiswahili) and was first generation American. Some interviewers had varying previous experience conducting interviews and all had significant prior experience conducting FGDs. Regardless of previous experience, all interviewers received centralized training in October of 2019 for the KIIs and February of 2020 for the FGDs.

Ethics

Prior to both KIIs and FGDs, we collected oral informed consent and patient demographics, and a $50 cash reimbursement was provided. We provided participants with an oral consent script that outlined the key components of study participation. This script summarized the study’s objectives, potential risks and benefits, and the study procedures. A study team member reviewed the script with the individual, ensuring their understanding and addressing any questions. All participants also received an informational sheet that provided a detailed description of the study purpose and summarized the consent process. Our informed consent forms were offered in several relevant languages (English, Amharic, Tigrinya, Somali, or Kiswahili). This verbal consent process was reviewed and approved by the University of Washington Institutional Review Board (IRB). The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Institutional Review Board of the University of Washington (STUDY00003046, November 30, 2017)

Interview/discussion procedures

Interviews were conducted in the participants’ preferred language whenever feasible. PLWH participants were offered the option to be interviewed by project members not belonging to an African immigrant community due to concerns of potential disclosure [22]. Two participants opted to undergo interviews in this manner and their interviews and consents were conducted in English by the Latinx member of our study team. Facilitators led their respective FGDs, while notes were taken by another team member from the same community. FGDs were community-specific and conducted in the group’s preferred language(s). FGDs for the Ethiopian and Somali communities were gender-specific, due to concerns regarding gendered power dynamics that may negative influence participation by women in mixed gender discussions, while the Eritrean community chose to conduct a mixed gender FGD. Three study team members identified joined the group at the start of each FGD to welcome and thank participants. These interactions were translated from the preferred language to English or vice-versa in real time by the FGD facilitator.

Depending on interviewee preference, KIIs took place in spaces such as ethnic community centers and health organization offices. The KIIs were conducted in several different locations throughout the metropolitan Seattle area. FGDs took place via Zoom. We recorded the KIIs and FGDs then translated and transcribed into English verbatim from the audio. The person who conducted the interview or led the group transcribed the recordings when possible. When transcription by the interviewer/facilitator was not possible, it was done by another member of the partnership team that belonged to the same community and then reviewed by the interviewer/facilitator for accuracy.

Interview/discussion guides

The KII guide largely focused on deepening understandings of intersectional stigma around HIV testing, and covered the following five main domains: 1) interactions with U.S. healthcare system; 2) barriers to health screenings; 3) stigma around health screenings and HIV-related stigma; 4) intersectional stigma and its influence on HIV testing; and 5) how to reduce stigma around health screenings, including HIV testing. The FGD guide largely focused on selection of an intersectional stigma reduction intervention, and covered the following three main domains: 1) stigma around health screenings and HIV-related stigma, including for HIV testing; 2) intersectional stigma and its influence on HIV testing; and 3) intervention development for stigma reduction around HIV, with emphasis on the role of religious leaders and institutions. To provide direction in selecting an intervention, three prototypes for HIV stigma reduction were discussed during the FGDs, with one of the interventions being faith based [23–26]. Our guide development was informed by the Earnshaw Stigma and HIV Disparities Model to use as a framework in designing probes for our interview guides [17,27]. The Earnshaw model, developed by Earnshaw and colleagues, highlights the role of community and individual level resilience resources as well as how various stigmas interact to impact structural and individual level processes. These various stigmas negatively impact HIV testing through multiple pathways, such as anticipated stigma surrounding a positive HIV test (due to HIV-related stigma and/or homonegativity) and reduced access to healthcare (anti-immigrant stigma manifested at a structural level). Additionally, Rao et al.’s multilevel stigma approach, [27] and the socioecological model, [28] also informed our guides and probes.

Data analysis

We uploaded English transcripts to NVivo (version 12.0, QRS International Pty Ltd.). We utilized inductive coding methods. Three team members (SH, GB, NS) conducted the coding with guidance from (RCP, FM, and RPK). In a group setting, we developed an initial codebook guided by readings of the first few transcripts and the KII and FGD guides. As transcript coding progressed, we iteratively adapted the codebook to reflect new findings. The three coding team members coded the first transcript together, then they double coded two transcripts and met to resolve any discrepancies by consensus, and then coded individually with SH reviewing all transcripts’ coding. To systematically capture divergent perspectives, we used NVivo’s comparison queries to examine differences between KII and FGD responses, as well as between PLWH and other participant categories. We maintained detailed analytic memos throughout the coding process to document patterns of convergence and divergence across participant groups and data collection methods. We held several group meetings to conduct thematic analysis, [29,30] and identified three overarching thematic domains that encompassed our emerging parent and child codes. These codes were then rearranged into the thematic domains with corresponding convergent and divergent subthemes accompanied by illustrative quotations.

1) Religious leaders and institutions as key facilitators

Across all three ethnic communities, both KII and FGD participants reported that religious leaders and institutions serve as important facilitators for their communities. First, participants in both KIIs and FGDs noted that these leaders and institutions exert considerable influence on their communities, with KIIs more frequently emphasizing their potential to mitigate stigma, while FGDs highlighted concerns about their role in perpetuating it. Participants indicated that the immense trust community members have in religious leaders makes them crucial allies to collaborate with for positive change. Participants also indicated that most members in their communities belong to religious institutions and those institutions play an instrumental role in their lives, from shaping their worldviews to influencing their day-to-day activities.

The elders and religious leaders would be the best people to be trained and given this information in order to create awareness within the community.“(56 year old male, Somali, imam/religious leader)

As conceptualizations of disease or illness are often tied into religious or spiritual beliefs, it is only appropriate that the religious leaders and institutions themselves incorporate health education and promotion in their teachings. Religious leaders, with their positionality and influence within these communities, appear to be the natural community leaders to respond to conceptualizations of disease, given that community members often mention disease as a punishment from God or the result of fate. In addition, participants from both the KIIs and FGDs identified homosexuality as a highly stigmatized identity within the community, with the majority of religious leaders and institutions in these communities upholding negative beliefs about homosexuality, morality, as well as its associations with HIV. It was mentioned that this homonegativity deters people from testing for HIV, due to the assumption that testing is only needed for those engaging in homosexual sex. As a result, most people choose to avoid learning their status rather than risk being stigmatized for same-sex behavior or perceived religious transgressions.. These homophobic beliefs are debilitating to the point where participants acknowledged that families would choose to hide the HIV status of their loved ones until they die, rather than disclose the positive status openly with their community. We also observed that at times that attributing immorality to people living with HIV may be independent of any homonegativity. Many participants thought their community members believed an HIV diagnosis as a curse on their family, implying a religious connotation, regardless of sexual orientation. One participant even stated that HIV is considered the “devil’s” disease. Given all the associations between HIV and religious beliefs, our participants felt strongly that involving religious leaders and institutions was paramount in any work to address HIV. Participants from both KIIs and FGDs suggested concrete ways in which religious leaders or institutions could influence community beliefs around HIV. For example, some participants noted that including health education or promotion in sermons is a powerful tool in mitigating stigma around HIV, and one participant specifically noted that having these leaders stress that seeking medical care does not adversely affect their relationship with God as an important message to convey during sermons. Therefore, empowering religious leaders to positively message HIV can effectively reach many community members, and working on ways to appropriately educate the religious leaders should be a priority item for work addressing HIV in these communities.

“Homosexuality is a major issue in the community so there is no doubt that they would stigmatized. If someone is homosexual, they would never risk to be recognized so they would never do HIV screening.” (40 year old female, Eritrean, housewife)

“It [HIV] is not a life sentence. You can go to churches also the congregation it is good for them to be educated about it even if it’s a five minute talk. It will help us all in that church, you can get one or two. Yeah, it will help somebody. At least someone will come out and someone maybe has been dying with it and they don’t know where they can reach out. So you don’t know how many souls you’ll reach out in the community. Even in the church, you never know.” (38 year old female, Kenya, banker)

2) Existing wealth of community resources, including ethnic community centers, health boards, and healthcare professionals

Participants identified a wealth of community resources already available in their communities to be leveraged for positive change. Across both FGDs and KIIs, participants repeatedly stressed the interconnected nature of social networks or strong social cohesion among the Ethiopian, Somali, and Eritrean communities in the U.S. This social cohesiveness is driven by ethnic, sometimes even tribal-level, and country-specific identities. They highlighted that, while social cohesion can be detrimental to HIV testing (as we have described at length elsewhere) [31], social cohesion can also be leveraged for positive change. One key element of social cohesion our participants identified was community members coming together, facilitated in one form or another by trusted leaders and institutions.

“Religious institutions and other organizations in our community have not done anything so far to reduce the stigma associated with HIV. They also have not done much to teach the community about the virus. It is very disappointing. More than the community center I lay the blame on religious institutions because that is where the majority of the population largely congregate.” (54 year old male, Ethiopian, retiree)

FGD participants, particularly community members without a known HIV diagnosis, affirmed the confidence and connection community members place in ethnic organizations and their willingness to seek health-related guidance from them. The Ethiopian, Somali, and Eritrean Health Boards emerged as key resources in advocating for and educating their communities to effectively respond to and raise awareness regarding HIV.

PLWHIV interviewed in KIIs strongly emphasized that health education on stigmatized illnesses, including HIV, must come from within the community rather than from external sources. FGD participants also echoed this sentiment, stressing that utilizing trusted health professionals from the community to provide education on stigmatized illnesses is far more effective in driving change than bringing in someone who isn’t a member of the community. They indicated that their community members want to hear from others from their own communities, including existing health professionals. To have the conversations led by health professionals from the community would also encourage a more “grassroots” approach, which participants felt would be better perceived by their community members. One participant even mentioned HIV education should only be done by health professionals who are from and live in the community, stressing that trusted health professionals from the community can provide culturally sensitive appropriate education.

“If you say to the community “a doctor will come and teach you” nobody will come, however, if you start organizing and creating awareness about it using people from their own community, the doctor can come and make an impact because they are organized and aware about it. So, start from the grass root using their own people and then you can proceed to the next level.” (38 year old male, Eritrean, supervisor)

Both KIIs and FGDs highlighted the role of annual health fairs hosted by ethnic health boards or committees aid community members who have not previously engaged in preventive health care and promote engagement by connecting participants to health providers from their own communities in a culturally secure environment or context. Healthcare professionals from their own communities are valued resources, because they are perceived to facilitate a sense of comfort and faith in this process given their cultural and linguistic understanding of the communities. Some participants felt that the health professionals from their communities may also be better able to reach youth rather than professionals from outside their communities. The idea of meeting the community where they are with health services was thought to be crucial in making these services more accessible, as opposed to promoting preventive health care activities that asked the community members to engage in existing health systems, such as doctor’s offices.

3) Culturally-rich, existing ethnic media resources, including social media

Our findings showed that the utilization of multifaceted and existing communication channels are crucial to maximizing the benefits of trusted and well-known resources within the community. Awareness of these services are widespread among community members. Participants suggested that short programs on ethnic television channels specific to each community might effectively change perceptions around HIV. Social media, many felt, could also be leveraged as an additional platform for awareness. Importantly, participants did note that generational differences are apparent in the reach of each medium type, since elderly members often prefer in-person outreach while the youth are very engaged with social media. Regardless of the medium, participants stressed that a personal connection with the source of the information is of prime importance given the strong social cohesiveness and networks in their communities. Our participants also highlighted that verbal communication of health information is key for “word-of-mouth” communities.

“While social media platforms like Snapchat, WhatsApp, Facebook are very important platforms, there also need to be continuous community engagements and face-to-face meetings of at least twice a month to share information. People and the community need to understand that the existence of these diseases in the proper professions and treatments.” (40 year old female, Somali, community health worker)

We’re very verbal oral community. It’s always good to make a flyer or a poster or whatever that is so somebody has something to go home with. But unless you’re sitting and having a conversation and it’s a verbal exchange that information will never be fully taken in by the community.“(32 year old female, Somali, doctor)

Additional elements highlighted by participants included a variety of suggestions related to more effectively targeting messaging around HIV for their communities. First, some participants were eager to have PLWH from their community share their lived experiences with other community members, feeling that knowing someone in their community living successfully with HIV would help their community members think in a very socially-connected way about HIV. Some did acknowledge, however, that the high stigma around HIV would make it hard for many PLWH in their community to come forth and disclose their status, yet several participants did indicate that one or two persons in the various East African communities who they knew had widely disclosed their positive HIV status. Having those individuals who are comfortable with disclosing their status and sharing their experiences would have tremendous meaning for community members. Second, some participants thought that incorporating parables of community members supporting each other within health education messages would resonate well with their communities, again highlighting a layer of social connectedness being a strength to foster in health promotion. Third, another suggestion was to facilitate informal discussions of HIV through community gatherings where members can congregate and eat together, an important element to how these communities socialize. Many of the existing ethnic health boards or community centers already organize such events for their community members, for example, via a monthly breakfast for their elders; participants thought such opportunities should be leveraged to help positively message HIV. Fourth, the importance of centering messages with appropriate languages was noted, as participants felt that messaging in English for communities whose preferred languages are not English is a barrier to effective health promotion.

HIV education in religious organizations

Our findings advance understanding of how religious institutions can serve as implementation sites for stigma reduction interventions, addressing a critical gap in the Earnshaw Stigma and HIV Disparities Model regarding faith-based community resilience resources.Religious leaders hold remarkable positions of power and trust in these communities, so empowering religious leaders to address HIV stigma could be a powerful tool to address HIV in these communities. Our study found that shame and stigma associated with HIV can be debilitating to the point where family members feel the need to hide a family member living with HIV from the public [32,33]. Some PLWH decline participation in religious organizations, primarily due to a fear of involuntary disclosure and the associated stigma [34,35]. A clear opportunity to promote HIV education and awareness via religious systems exists, which some projects have actively done in the U.S [36, 37].

Another challenge our participants anticipated in working with religious leaders is disassociating the link between homonegativity or “immoral” sexual practices and HIV within these communities. Yet, we repeatedly heard from our participants and community partners that religious leaders and institutions are crucial contenders to collaborate with for positive change. We believe partnering with community organizations who already have trusting relationships with religious leaders and institutions can be a way forward. For example, one of our partners is already working with religious leaders to promote health education regarding diabetes care, a disease less stigmatized than HIV in these communities [19]. This partnership is now ready to include addressing HIV stigma. Another way forward, as we have found in our prior work, [6] can be to integrate HIV education into a broader agenda to address various health diseases. Lastly, given the layers of discrimination these communities face due to their intersecting identities [38], applying a health equity and social justice lens to health promotion activities, particularly in religious spaces, could be a powerful strategy [39]. This approach could help address not only health disparities but also the broader social determinants of health that disproportionately affect these populations [39]. By integrating health equity and social justice principles, religious leaders and community members could advocate more effectively for systemic changes that promote equitable access to healthcare and reduce stigma [39]. This framework empowers these communities to challenge structural barriers, advance health literacy, and create more inclusive health policies, ultimately fostering a more supportive environment for health promotion.

Utilizing existing community resources

Our asset-based approach directly challenges deficit-focused models in implementation science by demonstrating how community pride and existing social capital can serve as intervention foundations. Work among Boston’s immigrant Somali community found that a robust social support network was crucial for sustaining a resilient community, that the strength of the social cohesion was a point of pride [40]. Therefore, the challenge for those working to infuse behavior change in these communities is to understand how to tap into those tight-knit social networks for positive change. For instance, during the COVID-19 pandemic, community partnerships have successfully communicated emergency information to vulnerable populations by leveraging existing networks [41]. Furthermore, utilizing existing community information sharing networks could be instrumental in overcoming the barriers of mistrust of the U.S. healthcare system, a key barrier in accessing HIV testing and other preventative healthcare services [6]. Likewise, other barriers such as language preferences and intersectional stigmas would be easier to overcome by leveraging the trusted channels and leadership already established by the communities themselves [42].

Contribution to implementation science and stigma reduction literature

Our findings make several key contributions to implementation science and multilevel stigma reduction frameworks. First, we extend the Earnshaw Stigma and HIV Disparities Model by providing concrete examples of how community and individual resilience resources can be systematically identified and mobilized within immigrant populations [17,18,43]. Our asset-based approach demonstrates how the “community resilience” component of this model can be operationalized through religious institutions, health boards, and media networks. Second, our work advances implementation science by illustrating how the Research CFIR constructs of “networks and communications” and “cosmopolitanism” can be leveraged within immigrant communities [14,44]. The transferability of our approach suggests that other immigrant groups facing similar challenges, including language barriers, healthcare mistrust, and intersectional stigma, could benefit from parallel asset-identification processes. This framework could be adapted for other African immigrant populations by focusing on their unique cultural strengths while applying similar principles of community-led intervention development.

Developing and implementing an intervention

We found that all three communities suggested utilizing word of mouth, especially for the elderly, to effectively communicate health information in these communities, which often have rich oral history traditions [45]. For example, parables that embody connotations of religion can be leveraged for health promotion, in ways that are more acceptable, and even comfortable, for the community members. Additionally, our findings highlight perceived challenges in reaching different generations with HIV prevention information. Social media, with its impersonal and private use, and other online resources were often noted as being easier to navigate by younger vs. older generations, and that elderly members of the communities preferred in-person outreach. Thus, enabling health promotion or education that uses oral stories or informal communication via word of mouth may be influential in decreasing HIV stigma. This has been done previously to promote HIV testing and condom use among a Latinx community, where “traditional” communication in person performed better for changing attitudes towards HIV testing than social media [46]. Nonetheless, we acknowledge that implementing interventions promoting informal communication are fraught with the many inherent difficulties in developing tools that can be standardized and ensure fidelity for intended information.

Relatedly, we encountered concerns regarding older individuals’ difficulty in using English as the dominant language and feeling disempowered to not use their preferred language when navigating U.S. healthcare systems. While non-English language interpretation is frequently available in-person or telephonically, these services have many limitations, from inaccuracies in interpretation to concerns over loss of confidentiality [19]. Thus, community-led, in-person outreach may help center the intervention on preferred languages and foster accessibility and reach. Accessing information and healthcare in an individual’s preferred language is not only vital for understanding but also has the potential to mitigate other barriers such as medical mistrust. Thus, interventions for these communities must include elements that prioritize multilingual and multigenerational, as well as culturally-centered programs.

Furthermore, while the research was conducted in partnerships with only three East African communities, the shared cultural, social, and health-related experiences among them suggest that the insights gained could have broader applicability with nuances accounting for specific emphasis or highlights that may differ. The commonalities observed in the ways these communities approach health, particularly around stigma and access to care, may resonate with other African immigrant populations facing similar barriers. Additionally, immigrant groups from different regions who experience parallel challenges related to acculturation, health disparities, and access to services may benefit from the strategies and interventions developed from this study. This potential transferability underscores the importance of understanding community-specific factors while recognizing broader systemic issues that influence health behaviors and outcomes in immigrant populations. Further research is needed to explore how these findings can inform health interventions for a wider array of immigrant groups.

Limitations

Our study has several limitations. First, we acknowledge that our approach to understanding community resources explicitly pivots away from focusing on any deficiencies in resources, so we do not aim for “comprehensiveness.” Second, this study was conducted in exclusive partnership with the Ethiopian, Somali, and Eritrean communities in King County. However, the commonalities between the three groups suggest that transferability to other African immigrant communities or perhaps other immigrant groups is possible. Furthermore, relying on community partners for recruitment introduces potential bias. However, their engagement with community leaders fostered trust and confidence. Generic strategies like flyers or social media are less effective because these communities rely more on interpersonal connections. Future efforts can incorporate diverse recruitment methods to reduce bias. Third, KII and FGD participants were selected to represent target subgroups, such as PLWH and religious leaders, which may have reduced the breadth of community perspectives included in the study, though others still participated, resulting in an adequately diverse range of community perspectives. Fourth, potential social desirability bias may have influenced responses, particularly in community-based FGDs discussing a highly stigmatized topic like HIV, where participants may have been reluctant to express views that could be perceived negatively by peers or community members. Fifth, the COVID-19 pandemic introduced unique challenges to the study, particularly in transitioning to virtual focus groups. While KIIs were conducted in person, the pandemic required the FGDs to be moved online. This transition to virtual focus groups also required participants to have a certain level of digital literacy and comfort with technology, which may have excluded some individuals from taking part. Despite these challenges, the research team adapted well to virtual formats, and the data collected from both KIIs and FGDs remain valuable in capturing participants’ perspectives. The shift to virtual FGDs may have impacted the dynamics of group interaction, but our overall findings were consistent across both methods. Despite these limitations, our study has conducted unique work with the Ethiopian, Somali, and Eritrean U.S. communities to develop a greater understanding of community resilience resources as they relate to HIV stigma.