(Re)producing HIV Care for Ukrainian Refugees in Germany and Poland: Trans-Local Community-Based Support in Action

Abstract

Following the 2022 Russian invasion of Ukraine and the resulting refugee crisis, this study investigates innovative and flexible forms of trans-local care among communities of Ukrainian refugees living with HIV in host countries, particularly Germany and Poland. The study adopts a community-based participatory research approach to understand how trans-local community-based organizations (CBOs) support access to HIV care for Ukrainian refugees in Germany and Poland, and what roles activists and peer networks play in overcoming barriers to healthcare in the context of forced displacement. It is based on semi-structured interviews with refugee activists, community members, healthcare professionals, social workers, and subject-matter experts—52 interviews in total conducted in 2023–2024. The research identifies emerging configurations of community networks that facilitate access to healthcare, including community-based, mixed-type, and bridge-type organizations. Activists play a central role in navigating unfamiliar healthcare systems, advocating for migrant-sensitive services, and developing grassroots solutions to both individual and structural barriers to HIV care in contexts of forced displacement. Migrant organizations are instrumental in facilitating community-based linkage to HIV care for refugees. In the case of Ukrainian transnational communities, these organizations draw on previously acquired experiences, knowledge, and skills to support their peers. The involvement of community-led initiatives is essential to reducing disparities in healthcare access and promoting the well-being of forced migrants.

1. Introduction

1.1. Complex Contexts and Unmet Healthcare Needs Among Displaced Populations

The Russian invasion of Ukraine in February 2022 triggered a significant refugee crisis that altered Europe’s demographic landscape. Among those fleeing, women and children account for the majority, largely due to military restrictions preventing men from crossing borders (Andrews et al. 2023; de Vries et al. 2024). Within displaced populations, individuals with chronic conditions—including people living with HIV—constitute particularly vulnerable groups. Other marginalized populations, such as LGBTQIA+ individuals and people with drug dependencies, are also disproportionately affected due to pre-existing vulnerabilities and heightened health risks linked to forced migration. Addressing their healthcare needs requires overcoming systemic barriers related to funding, policy, and service coordination.

Migration functions as a social determinant of health through a complex mix of factors—such as socioeconomic status, legal obstacles, challenges navigating unfamiliar medical systems, and language barriers—that influence migrant well-being (Marmot 2005; Castañeda et al. 2015). While ethnicity is often emphasized in migration and health research, discrimination and racism faced by refugees receive less attention. However, HIV activists within displaced populations are increasingly addressing these issues. Evidence from Germany suggests that common unmet needs among the refugee population include urgent medical treatment and childcare access (Longitudinal Survey of Ukrainian Refugees 2024). However, the literature on HIV mainly focuses on testing and linkage to care, with little attention to the migrants’ lived experiences, especially concerning treatment interruptions (Kamenshchikova et al. 2024). Research on forcibly displaced women who use drugs underscores the heightened importance of facilitators for engagement in HIV services, particularly for medication adherence and mental health support (Karagodina et al. 2023). These challenges are expected to intensify in cross-border displacement due to additional language, cultural, and healthcare system barriers.

Sustainable and equitable healthcare requires recognizing community-based organizations (CBOs) and their members as “experts-by-experience” (Mazanderani et al. 2020). Evidence shows that CBOs play a critical role in bridging gaps in service delivery, particularly for marginalized populations affected by HIV, by providing culturally sensitive outreach, navigation of care systems, and peer-based support (Robillard et al. 2022; Marano-Lee et al. 2022). In resource-constrained settings, effective management practices and community engagement within HIV-focused CBOs have been linked to improved program reach and treatment adherence (Akeju et al. 2021; Kouanfack et al. 2023). These organizations’ ability to adapt services to local contexts, offer flexible care pathways, and advocate for structural change underscores their importance in mitigating health disparities for displaced populations. Adequate funding, training, streamlined healthcare access, and collaboration platforms involving governments and international agencies are essential to strengthen their capacity (Cortes et al. 2024).

Comparative research reveals significant differences between Ukrainian and host country healthcare systems, affecting refugees’ ability to access care in countries like Germany (Davitian et al. 2024; Rolke et al. 2024). Key disparities encompass healthcare pathways, insurance coverage, waiting times, medication availability, vaccination practices, and informational needs. Among key populations in Ukraine, care preferences vary widely: women tend toward state-run clinics, queer individuals prefer community-recommended doctors, while men who use drugs have lower rates of accessing HIV services (AFEW-Ukraine 2024). Additionally, sex workers from Ukraine face barriers both domestically and abroad due to damaged healthcare infrastructure and stigma (Dziuban 2023).

Finally, as noted by Shevtsova (2024), international funding shortages have prompted tensions between non-governmental organizations (NGOs) and activists working with forcibly displaced LGBTIQIA+ individuals. Activists often must prioritize short-term projects to secure funding, potentially compromising long-term sustainability and strategic planning. The critical contribution of CBOs in navigating these structural inequities highlights the need to integrate grassroots actors into broader public health strategies to ensure continuity of care and equitable service provision (Robillard et al. 2022; Marano-Lee et al. 2022). The operation of CBOs relies heavily on volunteer work, ranging from informal grassroots initiatives where people exchange resources and experiences to more formal projects with clearly defined roles and responsibilities. It is interesting to consider how these different forms of volunteering interact. Grassroots volunteerism fosters a sense of local community and social responsibility, while participation in structured projects provides opportunities to develop professional skills and broaden one’s horizons.

1.2. Access to HIV and TB Care Among Ukrainian Refugees: Contrasts and Challenges in Germany and Poland

Germany and Poland are the two EU countries that have hosted the largest numbers of Ukrainian refugees since the onset of the crisis (Eurostat 2024). Beyond sheer numbers, these are also the countries where patient community groups and NGOs formed by refugees from Ukraine have emerged most visibly and are in transition to becoming registered legal entities. These organizations play a distinct and important role in connecting newly arrived individuals to healthcare services. For this reason, we selected Germany and Poland as focal countries for this study in order to explore and document their specific contributions within the medical system.

To be more precise, Germany currently hosts 1,243,445 individual refugees, while Poland has recorded 993,795 Ukrainian refugees (Eurostat 2024). Though their shares are similar in percentage—26.9% of the EU total in Germany and 23.3% in Poland—the countries differ significantly in how support for refugees is organized, so they provide distinct contexts for examining the formation and activities of community-based organizations (CBOs) among Ukrainian refugees. In Germany, Ukrainian refugees have access to a medical insurance plan guaranteed by their protection status, covering pre-booked doctor visits and general practitioner services. However, challenges persist. Although interpreters and assistants are theoretically available, access is often inconsistent and time-consuming (Rolke et al. 2024), with communication success heavily reliant on the language skills of both parties (Biddle et al. 2022). The German Medical Association (128. Deutscher Ärztetag 2024) recommends introducing regulations to cover language mediation for non-German speakers and suggests using state funds to procure artificial intelligence solutions for medical and mental health support.

Navigating the healthcare system is particularly difficult for newcomers living with HIV due to stigma and reluctance to disclose their status, compounded by the need for HIV-specialized care. Germany’s decentralized system, with varying regulations across federal states, poses mobility barriers, as refugees risk losing established medical support if they relocate. Existing research highlights that many refugees rely solely on informal sources for healthcare information in Germany, which can lead to misinformation, distrust, and poor health outcomes (Rolke et al. 2024; van Loenen et al. 2018). For people living with HIV, treatment interruptions from miscommunication may be life-threatening.

In Poland, Ukrainians are often seen as culturally similar due to linguistic and geographical proximity. Despite legal frameworks aimed at helping a predominantly female refugee population (Andrejuk 2023), their lived experiences often resemble those of labor migrants, characterized by insecurity, heavy workloads, limited medical access, and employer dependency (George and Borrelli 2024). Initial government responses seemed welcoming, but critics highlight a lack of long-term strategic planning. Czepil and Jańczak (2024, p. 42) assert that essential services like housing, social inclusion, and tailored education for children cannot be effectively managed without central government involvement. Access to medications remains critical; co-payments are often unaffordable, and some essential drugs, such as antiretrovirals and anti-TB treatments, are unlicensed or unavailable (Aljadeeah et al. 2022; Lee et al. 2023).

Although the solidarity of local civil society with Ukrainian refugees is of significant research interest, this article specifically focuses on community-based organizations (CBOs) serving key and vulnerable populations who migrated from Ukraine. Following background and methodology, the analysis addresses gendered aspects of the refugee influx, shifting refugee demographics, barriers to HIV treatment, and the crucial role of migrant organizations in overcoming these challenges, concluding with their vital contribution to community-based HIV care linkage.

In this project, we use the terms “trans-local” (Adamson 2023; Agustín et al. 2024) and “transnational” (Ziegelasch et al. 2023) to capture the complex realities of communities affected by displacement. “Transnational” refers to cross-border activities and support systems operating beyond national boundaries, while “trans-local” emphasizes the interconnectedness of geographically dispersed communities striving to maintain HIV care networks despite disruptions caused by the war. This distinction is important because it highlights the multifaceted nature of support systems, encompassing both formal cross-border initiatives and informal community-based networks. The Russian war in Ukraine has forced these communities into movement, both within the country and abroad, challenging traditional models of HIV service delivery and demanding a more person-centered and flexible approach.

2. Materials and Methods

This article presents findings from the research project “Ukrainian Refugees in Receiving Countries: Barriers, Coping Strategies, and Community Engagement to Enable Effective Access to HIV and TB Care,” based on community-based participatory research principles (Wallerstein et al. 2018; Wallerstein and Bonnie 2006; Baum et al. 2006; Israel et al. 1998). This collaborative project brings together HIV activists, community experts, and social researchers to investigate the challenges faced by Ukrainian refugees in accessing essential HIV and TB healthcare services. Guided by a participatory paradigm, the research emphasizes community engagement and empowerment, with community representatives actively involved in all stages of the research process, namely from study design and data collection to analysis, evaluation of outcomes, and recommendation formulation. This participatory approach ensures that the research is grounded in the lived experiences of the community to contribute to meaningful social change.

Interviews for this study were conducted with two distinct groups: people living with HIV, TB, or at risk of HIV, whose interviews focused on lived experiences and access to care in the context of relocation; and experts, whose interviews centered on professional perspectives and systemic responses. The study protocol received a favorable opinion from the INSERM Ethics Committee (reference No. 23-1025). Following data collection, all collected interviews were transcribed verbatim and anonymized. To manage the data and enhance analytical transparency, Atlas.ti Web software was used.

This article is based on an analysis of 52 interviews, carried out in Poland and Germany, with 25 and 27 interviews, respectively. Among the study participants, 35 were refugees, including 10 who actively volunteered in community health activities to support newly arrived migrants and refugees requiring assistance and accompaniment. The remaining 17 participants were experts and care providers, some of whom were themselves people living with HIV and refugees, thus belonging simultaneously to both subgroups. The overlap between community activism, migration experience, and membership in key populations creates a complex classification landscape. All interviews were conducted between July 2023 and November 2024. The interviews lasted between 30 min to 2 h and were audio-recorded following participants’ oral consent, which was recorded using an audio recorder. This practice was also applied for expert interviews. The physical location of the interviews included private rooms in offices or the homes of participants. Confidentiality was ensured by conducting interviews in these private and secure settings. Study participants with refugee experience, aged 18 to 52, included individuals living with HIV and those who had received treatment for tuberculosis while in migration (see

Table 1. Characteristics of interviewees.

	Gender	Country	Age	Year Left
Participant 1	Female living with HIV	Germany	43	2022
Participant 2	Female living with HIV	Germany	43	2022
Participant 3	Female/living with HIV + affected by TB	Germany	42	2022
Participant 4	Female living with HIV + affected by TB	Germany	37	2022
Participant 5	Male living with HIV	Germany	42	2022
Participant 6	Male living with HIV	Germany	49	2022
Participant 7	Male living with HIV	Germany	50	2022
Participant 8	Female living with HIV	Germany	48	2023
Participant 9	Female living with HIV	Germany	42	2022
Participant 10	Male living with HIV	Germany	27	2022
Participant 11	Male living with HIV	Germany	31	2023
Participant 12	Female living with HIV	Germany	22	2022
Participant 13	Female living with HIV	Germany	43	2022
Participant 14	Female living with HIV	Germany	37	2022
Participant 15	Transwoman living with HIV	Germany	35	2022
Participant 16	Male living with HIV	Germany	39	2022
Participant 17	Female living with HIV	Germany	47	2023
Participant 18	Male living with HIV	Poland	49	2022
Participant 19	Female affected by TB	Poland	39	2022
Participant 20	Female living with HIV	Poland	37	2022
Participant 21	Male living with HIV	Poland	32	Before 2022
Participant 22	Female living with HIV	Poland	42	2022
Participant 23	Female living with HIV	Poland	42	2022
Participant 24	Female living with HIV	Poland	47	2022
Participant 25	Female living with HIV	Poland	51	2022
Participant 26	Female living with HIV	Poland	47	2022
Participant 27	Male living with HIV	Poland	41	2022
Participant 28	Male living with HIV	Poland	18	2022
Participant 29	Female affected by TB	Poland	37	2024
Participant 30	Female living with HIV	Poland	45	2022
Participant 31	Female living with HIV	Poland	44	2022
Participant 32	Female living with HIV	Poland	45	2022
Participant 33	Female living with HIV	Poland	40	2022
Participant 34	Female living with HIV	Poland	38	2022
Participant 35	Male living with HIV	Poland	52	2022

). Most refugees lived alone or with minor children, residing in dormitories or rented apartments. All interviewed refugees were based in urban areas or nearby suburbs.

The subgroup of experts included social workers, specialists, and medical professionals from both host countries (see

Table 2. Brief description of experts.

	Expert’s Role	Country	Sex
Expert 1	Family doctor	Germany	Female
Expert 2	Outreach social worker	Germany	Male
Expert 3	HelpNow HIV and TB Hotline coordinator	Germany	Female
Expert 4	Social worker at German service NGO	Germany	Male
Expert 5	Social worker at German service NGO	Germany	Male
Expert 6	Psychologist, LGBT rights NGO	Germany	Female
Expert 7	Social worker, LGBT rights NGO	Germany	Male
Expert 8	Infectious diseases doctor	Germany	Male
Expert 9	Social worker at German service NGO	Germany	Female
Expert 10	Social worker at German service NGO	Germany	Male
Expert 11	TB project coordinator	Poland	Female
Expert 12	HelpNow Hotline coordinator	Poland	Female
Expert 13	HIV/TB expert, researcher, advocate	Poland	Male
Expert 14	Infectious disease doctor	Poland	Female
Expert 15	Communications specialist (HIV care NGO)	Poland	Female
Expert 16	Social worker (HIV care NGO)	Poland	Female
Expert 17	HelpNow Hotline coordinator	Poland	Female

). Conversations were held in Ukrainian, Russian, German, and English, depending on the interviewee’s preference. Three co-authors (DK, MV, and KR) used a participatory approach to develop the interview guide, refining it based on feedback from Ukrainian CBO members and refugees. The interviews with individuals displaced after the war’s onset were primarily conducted by three community leaders from the refugee-based organization Fundacija HelpNowHUB in Poland. In Germany, interviews were facilitated with the support of the organizations 100%Life, UkrPlusDe, and the Alliance of Public Health of Ukraine. Both community-based and academic interviewers, who carried out the interviews, received comprehensive training on qualitative data collection and ethical research principles according to the study protocol and INSERM guidelines during the project’s kick-off workshop in Paris in February 2024. None of the participants were compensated for the interviews; most were motivated to contribute voluntarily due to their community activism or a desire to share their stories and expertise.

Among the refugees listed in Table 1, some primarily received services, while others acted as peer advisors, providing support and guidance to fellow refugees. Often, participants occupied mixed roles, simultaneously receiving assistance and helping others, reflecting the fluid and reciprocal nature of community-based care in displacement contexts.

The development of the codebook for a reflexive thematic analysis proceeded in several stages. Initially, the research team (DK, KR, MV) compiled a preliminary set of codes based on an in-depth examination of three transcripts. This draft was then discussed, reviewed, and refined: overlapping codes were merged, and subcodes were identified to enhance the structure and coherence of the coding scheme for the entire dataset. During the stage of conceptualizing and drafting the article, the team revisited the material to select illustrative quotations.

The reflexive thematic analysis for the article elaboration, guided by the six-phase framework of Braun and Clarke (2019), was thus employed. This involved familiarization with the data; generating initial codes such as “choice of host country,” “aid trajectories,” and “forms of peer support”; searching for and reviewing themes; defining and naming subthemes; and producing a preliminary report. Emerging themes were discussed repeatedly among the co-authors and with community activists. This approach enabled a rigorous and systematic identification of key themes and patterns related to HIV activism and the experiences of those involved.

3. Results

The analysis demonstrates that community-based organizations (CBOs) developed by and for Ukrainian refugees living with HIV have become critical infrastructures sustaining continuity of care in displacement. Across different aspects of refugee life—access to services, gendered responsibilities, prolonged uncertainty, stigma and silence, and transnational mobility—CBOs function as mediators, organizers, advocates, and transnational connectors. They are not marginal supplements to official reception systems but central actors whose work has determined whether displaced individuals could maintain treatment, find housing, and regain a sense of belonging. The following subsections illustrate how CBOs operate within each theme, supported by testimonies from those directly engaged in their work.

3.1. Community-Led Responses to Barriers in HIV Care for Displaced People

Our analysis showed how a combination of individual, relational, and structural factors shapes barriers to accessing HIV care. Refugees and migrants from Ukraine face numerous disruptions, long waiting periods, and prolonged uncertainty in accessing the benefits allocated to them as temporary protection seekers in European host countries under the Mass Influx Directive. To respond to these gaps, activists and peer counsellors provide various forms of extensive support, which are discussed here.

Our interviews with participants of activist networks and frontline organizations show that some refugees arrived one after another, with the support of their peers from Ukraine who also became displaced.

I came here with a Ukrainian HIV service organization. We had several options, like Poland, Germany, or some other country. When we were on our way, the head of this organization called everyone; she knew how to make arrangements for us. Finally, we agreed on Berlin.

(Participant 13, 43-year-old female, PWHV)

Within the new medical infrastructure, Ukrainian refugees were among the first to engage in organizing phone helplines (HelpNOW), providing advisory services and online support groups, assisting with document translation, transporting those in need, arranging accommodation, and delivering food and hygiene items. These diverse forms of care can be understood as the embodied expression of emotional labor in peer support.

We have a place in the city park where we meet like a small peer support group. They are my clients, I call them volunteers, peers. It is basically like the first stage of activism—people who are willing to help themselves and help others around them a little bit. They can bring in newcomers who have just recently arrived to orient them.

(Expert 10, male, social worker)

It is crucial to highlight the importance of activists maintaining a critical stance toward existing support schemes in destination countries. Newcomers often offer fresh perspectives, shedding light on gaps or shortcomings in well-established systems. Our research participants illustrate that the services currently available often fail to address the specific needs of people on the move. The transformative potential of these new activist configurations lies in their capacity to advocate for more inclusive and responsive support systems. By identifying the limitations of outdated schemes and proposing practical, immediate solutions, they play a pivotal role in driving positive change within HIV support networks in Poland and Germany.

3.2. Gender Dimension in Ukrainian Forced Displacement and Female Peer-Support

The experience of war displacement disproportionately affects women, who often assume the role of sole breadwinner for their dependents in the context of financial difficulties. This gender role is aggravated by the burden of dividing daily family care between present and remote family members and often leads women to postpone their own needs, including primary and HIV-specific healthcare. This aligns with the practices of community networks, which are becoming increasingly personalized in distributing resources to specific individuals based on their requests.

Some needed buckwheat, and some needed shoes for themselves or their children. A lot of mothers came with their kids and can’t get a job, at least some temporary part-time work, to provide themselves with basic conditions for existence and life.

(Expert 12, female, HelpNow Hotline coordinator)

Facing displacement, Ukrainian women are leveraging existing networks and creating new communities of care to achieve social justice. One example of such a community is Fundacja HelpNowHUB, an organization founded by Ukrainian women in Poland. Fundacja HelpNowHUB provides complex and flexible assistance to those in need, operating as a multisite network. By offering mutual support, these communities increase their visibility and contribute to the quality of life for those in displacement. Furthermore, community engagement and short-term employment within peer groups can foster social embeddedness in host countries. This approach offers a valuable alternative to top-down, hierarchical practices and empowers displaced women to take control of their well-being.

3.3. Community Activists Help Navigate Prolonged Uncertainty

HIV activists and frontline social workers recognize that Ukrainian refugees are highly diverse in terms of age, gender, health status, economic background, and more. Their observations provide valuable insight into the evolving demographics of those seeking protection. One social worker described distinct waves of refugees: the first, in 2022, consisted mainly of middle-class women with language skills and experience in community organizing; the next wave included women from rural areas or small towns with limited international exposure. According to a German social worker experienced in supporting displaced people who use drugs, the most recent wave of clients is composed almost entirely of key populations.

They have been marginalized, they have been imprisoned, they have been cut off from a lot of opportunities in society to have access to something fully. And so, they’re out late. They’re out often after amnesty, or just because they’ve been released from prison. They’re very disconnected from everything. And they’re accordingly… well, they have huge needs and very limited opportunities.

(Expert 5, male, social worker)

Activists’ engagement goes beyond office hours and outreach spaces. Refugees face multiple barriers that foster social exclusion, and community activists help address challenges such as lack of insurance, limited access to antiretroviral treatment, and language difficulties.

We explain, we reassure, we support. We explain why this person needs support now without a pesel [residence permit]. That it’s vital. There are so many of these nuances, both human and social. After having solved their medical problem, people start to turn to us as personal peer counselors, indeed. In other words, they are looking for support from their peers in a foreign country.

(Participant 26, 47-year-old female)

These instances of self-organized communities of HIV activists show the powerful potential of mutual assistance, cooperation, and collective action. Together, through their agency, activists fill the gaps in how the missing elements for the adaptation of war refugees are provided—trust, bureaucratic navigation, solutions for undocumented persons, translation and linguistic support, urgent treatment and access to medical facilities, peer support, and human well-being. It would be impossible to ensure the continuity of HIV care in the absence of these elements.

Refugees from Ukraine who are not citizens may encounter unequal treatment, including denial of aid or housing support they are legally entitled to. These forms of discrimination highlight deeper structural biases that can disrupt or completely block access to essential services, particularly for non-Ukrainians at reception centers, perpetuating intersectional stigma against marginalized groups, including people living with HIV, LGBTQIA+ individuals, and transgender people.

Community volunteers play a crucial role in addressing social isolation and creating spaces of connection. Through informal networks and regular points of contact, they help refugees stay informed and integrated, while also fostering a sense of belonging. As one volunteer explained, describing their outreach to newly arrived refugees settling for the first time in the closed Tegel arrival center:

“It’s a good thing that there’s a network of volunteers. I even have this routine, I live right where the shuttle to Tegel departs, every ten minutes. And there I have a little mutual-support point. We smoke together, we talk, and that’s mostly where I meet new clients… And thanks to this network, at least we know what’s going on there.”

(Expert 10, male, social worker)

3.4. Refugee Communities Breaking the Silence in Receiving Countries

The early decades of the HIV epidemic in Europe, focusing on a relatively homogenous patient population (primarily gay men), have shaped healthcare systems in Western European countries in ways that do not entirely meet the needs of newcomers. Moreover, these long-established local NGOs in host countries, which have been operating for many years, often treat migrant communities as passive recipients of information and assistance, rather than as active participants in civil society.

We can keep very good relationships with local German organizations, for instance. But it will still not be peer-to-peer. Unfortunately, they look at us not as equal partners, but as a group that needs their support.

(Participant 8, 48-year-old female)

To make their actions more effective, Ukrainian HIV activists merge into groups and organize projects that disseminate information, provide therapy, solve everyday issues of housing, help with psychological support, and loudly articulate the problems they face. Among these problems, there is a lack of social workers who could help HIV patients navigate a completely new and different healthcare environment from the one they are used to.

Social work and equal counselling are exactly what is missing here in public health… This is an issue within German migration policy, because the officials think that we should first integrate, learn the language, learn the law, and thereafter we might be allowed to reach out to people, to talk to them as equal counselors. But we don’t have the time; we need to solve our community problems now.

(Participant 6, 49-year-old male)

The interview narratives add further layers of complexity to the experiences of people on the move, which are often overlooked by national temporary protection programs. These include legal precarity arising from transitions from labor migration to seeking temporary protection, undocumented status, third-country citizenship among war refugees, and repeated episodes of forced displacement.

In addition to accompaniment, HIV activists contribute to the fight against stigma and discrimination in their host countries, where the conversations about seropositivity remain an uncomfortable topic. In 2024, the leaders of the communities took part in the HIV awareness campaign “Living with HIV” (ŻYJĘ Z HIV) in Poland. By sharing their stories with open faces and advocating for change, activists contribute to creating a more supportive and inclusive environment for people living with HIV. They bring in new ideas and community-based approaches stemming from their experience in the origin country that help them break the silence in the receiving countries.

3.5. Community-Led Transnational and Trans-Local Responses

The picture of refugee mobility becomes even more complex when considering those who returned to Ukraine after initially seeking refuge in Europe. Their stories reveal the often insurmountable barriers and challenges of displacement. Among them are prominent HIV activists, family caregivers, and individuals whose quality of life deteriorated during or after relocation. A striking contrast emerges between the comprehensive care available in large Ukrainian cities and the limited resources in some small European host towns with little support infrastructure for vulnerable communities. One participant described the extreme difficulties they faced accessing opioid substitution therapy:

It’s hard for me to wake up early, but I had to get up at 5 a.m., because the site only worked until 10. And on top of that, the trip there took me two and a half hours. They didn’t switch me to a five-day schedule, so I had to come every single day to get my methadone. It was impossible—I was so worn out, completely exhausted.

(Participant 13, 43-year-old female)

Such barriers underscore the precarious conditions that shape everyday life in displacement. This particular client of a substitution therapy program made a decision to return to Ukraine mainly because of her health-related unmet needs.

As refugees moved beyond their first destination, local community groups often played a crucial role in ensuring continuity of support. Activists in Poland described how the lack of social benefits there prompted many Ukrainians to seek better opportunities in other EU countries. In this process, cross-border cooperation between grassroots organizations became essential, especially for vulnerable groups with complex needs. One interviewee explained:

Since there are few social benefits in Poland, people started migrating further. And our key communities began moving to other countries—but who did they turn to for practical guidance? This is where collaboration was such a huge advantage. In fact, the fact that we [Polish community activists] were working in the same field with Help Now in Germany and with UKR DE Plus [Ukrainian community groups in Germany] was incredibly important—thank you so much—because there were very complex cases that required continuous support. For example, people with severe disabilities needed ongoing accompaniment, at least by phone or online.

(Participant 8, 48-year-old female)

The long-standing experience of mutual support among people living with HIV, both in Ukraine and across Europe, became a foundation for collective action once many were forced into refugee status. On the one hand, regular cross-border trips for medical purposes turned individuals into “transit subjects,” moving in a space in between. At the same time, being embedded in peer communities meant that others could benefit from these journeys. The circulation of antiretroviral drugs, parcels, recommendations, prescriptions, medical records, doctors’ guidelines, and peer counselling along transnational mobility routes embodies the very essence of activist transnational and trans-local work.

This route of circular migration in the case of people living with HIV is determined by their specific needs, which are often unmet, considering the prolonged uncertainty. Ukrainian community members bring medicines and ART both for specific people displaced forcibly and to fill express first-aid kits that can be used in the future. Within the community, there is significant mutual aid, as one of the HIV activists tells us.

The woman living in Germany has been missing ART for three months—I guess because she is afraid of revealing her HIV status. It turned out that she was in <a town>, which is not very far from me. And it turns out that she took three daughters from Zaporizhzhia without passports, by foot, they somehow passed through the border control, yes. And here they live in [name of a small town]. She is the only one on ART; she lived without ART, and she was afraid to mention it. I say, “You realize you could have died, and you would have orphaned your children. Well, if you don’t even think about yourself, why don’t you think about them?”. I said to my colleagues, well, if you bring the therapy here, I will meet her here and give her ART. So, the therapy was transferred by a private car from Zaporizhzhia to Kyiv, from Kyiv to Lviv. From Lviv, the guy drove the car to Munich. I met him in Munich, took the therapy, and gave it to a girl in the town.

(Participant 26, 47-year-old female)

For community members who need high-level medical assistance or were forced to interrupt their treatment in Ukraine due to hostilities, return trips become a working and effective strategy for obtaining or re-entering their treatment program. For example, one of the study participants returned to Kyiv from Warsaw for her daughter’s complex operation to fight tuberculosis and then began making these trips regularly to obtain the necessary treatment and monitoring from the doctor who has known her child practically all her life.

The TB treatment regimens, protocols, and everything are the same in Poland and Ukraine. In Poland, there was a different scheme; it was a short-term treatment, our medications were not available here… We officially received a letter that the Kyiv TB Institute is ready to take us. They put us straight from the hospital into an ambulance and drove us to the Polish–Ukrainian border, where we transferred to an ambulance and went to Kyiv. I told the doctors at the Polish hospital that, as a Ukrainian citizen, I have the right to get treatment in Ukraine.

(Participant 19, 39-year-old female).

Indeed, community-based networks serve as assisting actors for refugees by providing care when it is discontinued or delayed by solving a whole range of issues on an individual level. The importance of this transnational care is illustrated by the case of the refugee mother who found the Ukrainian healthcare system more attuned to her child’s specific needs. This example underscores preserving cross-border connections between pre-displacement healthcare providers and host country support systems, and CBOs serve as a connection between the two.

Even while establishing lives in their host countries, many refugees continue to travel back to Ukraine for specialized medical care, complex procedures, or the ongoing treatment of chronic conditions. They return to trusted doctors who are familiar with their medical history, maintain established lines of communication, and have earned their confidence. These journeys also serve important social and emotional functions, allowing refugees to visit family, reconnect with friends and community members who remained in Ukraine, and sustain a sense of belonging. In some cases, refugees return to Ukraine permanently or move onward to third countries. Across all these scenarios, community leaders play a pivotal role in facilitating new connections, linking refugees to appropriate care, and extending trust within and across networks.

4. Discussion

This study contributes to the growing body of scholarship on migrant health and community-based responses to displacement by exploring the critical role of community-based organizations (CBOs) in bridging gaps in access to HIV care for Ukrainian refugees fleeing the Russian war. Our findings underscore that CBOs, often refugee-led and peer-based, serve as vital infrastructures of care that complement and sometimes compensate for formal healthcare systems, particularly in contexts marked by forced displacement and systemic challenges. Consistent with global evidence on the essential roles of CBOs in supporting marginalized populations (Mazanderani et al. 2020; Robillard et al. 2022; Marano-Lee et al. 2022), our research demonstrates how grassroots activism and community mobilization enable culturally sensitive outreach, tailored support, and advocacy for non-discriminatory healthcare policies. Examples such as PlusUkrDe e.V. in Germany and Fundacja HelpNowHUB in Poland illustrate how these organizations create safe spaces for mutual aid and empower affected individuals through participatory and experiential knowledge. Further, mixed-type organizations like BerLUN adopt flexible, needs-based approaches that bypass rigid institutional barriers, reflecting how practical solidarity and harm reduction strategies emerge in the absence of formal access to care (Castañeda et al. 2015). Host organizations act as crucial bridges, facilitating integration of refugee-led initiatives into the broader healthcare and civil society landscape, fostering community resilience and sustainability. Importantly, this study is among the first to examine how grassroots activism and CBOs dynamically emerge as support systems within an unfolding humanitarian and public health crisis. The complex realities of forced displacement, including pervasive stress and trauma (Owczarzak et al. 2024), demand sustained emotional labor from activists who often face risks of burnout while providing care.

Our participatory action research highlights the transformative agency of Ukrainian HIV-positive activists in reshaping care infrastructures from below, advancing the principle of “nothing about us without us” by involving affected populations in service design and policy advocacy (Mazanderani et al. 2020). Despite these contributions, structural barriers persist. Germany’s decentralized healthcare system, coupled with bureaucratic hurdles, and Poland’s insurance-based model, often restrict timely and equitable care access, disproportionately affecting marginalized subgroups such as LGBTQIA+ individuals and women who face layered vulnerabilities (Davitian et al. 2024; Strelnyk 2025).

We identified three distinct organizational types involved in peer HIV care: community-based organizations (CBOs), mixed-type organizations, and host-country support structures. CBOs, such as PlusUkrDe e.V. in Germany and Fundacja HelpNowHUB in Poland, are founded and run by Ukrainians living with HIV. These initiatives exemplify grassroots mobilization in response to institutional inadequacies. In addition to providing basic material and logistical support, they create safe spaces for mutual aid and advocacy, promoting non-discriminatory healthcare policies and reproductive justice. Their work highlights the importance of participatory and experiential knowledge in shaping effective public health responses (Mazanderani et al. 2020; Rabeharisoa et al. 2014). Mixed-type organizations, such as BerLUN, serve individuals with overlapping vulnerabilities—including opioid dependence, undocumented status, and HIV—by adopting flexible, needs-based approaches that bypass rigid administrative systems. Their operations illustrate how cross-cutting solidarity and practical harm reduction can function in the absence of formal access to care, echoing broader critiques of exclusionary state health systems (Castañeda et al. 2015). Host organizations, such as Berliner Aids-Hilfe e.V., play an instrumental role by serving as bridges between incoming refugee activists and the existing healthcare and civil society landscapes. These collaborations foster the emergence of new initiatives, exemplified by BerLUN, and highlight the importance of supportive institutional environments in promoting community resilience.

The gendered dimensions of displacement further complicate health-seeking behaviors, as women—constituting the majority of refugees—must navigate care responsibilities alongside economic precarity and intersectional stigma (Owczarzak et al. 2024; Shevtsova 2024). Our findings align with gender-focused scholarship emphasizing the undervalued, emotionally exhausting, unpaid labor of female activists, often framed reductively as altruism rather than care work, making them especially vulnerable to exhaustion and invisibility (Krivonos and Diatlova 2020; Krivonos et al. 2024). Ukrainian women’s historic and ongoing roles in care provision within humanitarian responses (Phillips 2008; Strelnyk 2025) are crucial foundations for the new communities of care they are building in displacement to advance social justice and foster social embeddedness (Phillips et al. 2023). The persistence of specialized needs, such as gender-affirming care for transgender individuals (Neduzhko et al. 2023) and tailored treatment approaches for HIV and tuberculosis, reveals important gaps in host country services that are predominantly designed to serve local populations, notably gay men, thereby excluding significant segments of the displaced Ukrainian population (Shevtsova 2024; Dohál et al. 2024).

The geographic proximity of Germany and Poland to Ukraine enables refugees to sustain transnational and trans-local care networks, facilitating healthcare continuity through cross-border movement, medication transfer, and remote peer support, embodying horizontal solidarity and mutual aid practices essential to survival amidst systemic disruptions (Adamson 2023; Ziegelasch et al. 2023). Recognizing and incorporating these grassroots, community-led practices into formal healthcare planning is vital. Beyond filling service gaps, these initiatives promote social cohesion and restore refugees’ sense of purpose and belonging. Experiences from HelpNowHUB and BerLUN exemplify how peer engagement and volunteering transcend coping mechanisms to become foundational elements of sustainable, inclusive care ecosystems (Martinez-Damia et al. 2024).

In sum, our study amplifies the agency of migrants and refugees living with HIV in co-constructing care infrastructures that are culturally responsive, flexible, and grounded in solidarity. These insights call for reimagining public health responses to displacement by centering community expertise, supporting grassroots activism, and addressing structural inequalities that undermine the continuity and equity of care. This approach promises not only to improve health outcomes but also to foster resilient, participatory health ecosystems adaptable to the complex realities of forced migration.

5. Limitations

Our paper has several limitations that should be acknowledged. First, its geographic scope is limited to Germany and Poland, which may constrain the generalizability of the findings to other national contexts with different migration dynamics, health systems, or policy environments. Second, the community-based participatory research design, while providing rich qualitative insights, may introduce bias in participant recruitment. Third, the direct focus on HIV care limits the applicability of the findings to the broader spectrum of refugee health needs. Finally, given the rapidly evolving nature of migration and public health policies—particularly in the context of refugee reception and HIV services—these findings should be understood as time-bound and potentially subject to change.

6. Conclusions and Implications

Refugees’ lives are marked by prolonged uncertainty, intensified by barriers such as language differences, unfamiliar bureaucratic systems, regulatory reductionism, the psychological toll of war, and stigma—challenges often overlooked by major NGOs, governments, and charitable organizations in host countries. As a result, migrant trajectories are too often viewed as fixed points in time, detached from their temporal and spatial complexity. This oversimplification reduces migration to a binary of here and there, ignoring the shifting realities of place, connection, and movement. Our study shows that a transnational perspective on HIV care—one that recognizes experiences of being here, there, and in between—reveals the multiscale effects of migrants’ vulnerabilities alongside the collective strengths they build through community-based efforts.

These findings underscore the critical need for collaborative frameworks between national and international public health institutions and displaced HIV activists to ensure the continuity of HIV care. Public health governance must actively engage with the lived experiences and situated knowledge of communities of people living with HIV, particularly through their representatives. Recognizing community expertise not only facilitates more inclusive and context-sensitive health interventions but also strengthens care linkage pathways. Furthermore, the knowledge, infrastructure, and trust embedded within CBOs represent crucial resources for improving health outcomes and supporting the broader well-being of migrants and refugees affected by HIV.