Syndemic perspective of how people living with HIV faced the COVID-19 crisis in North Africa

Abstract

The 2020–2023 COVID-19 pandemic impacted societies and healthcare access worldwide, including HIV services. Changes in access exacerbated social inequalities in health among socially underserved groups including people living with HIV (PLHIV). This study aimed to explore PLHIV’s psychosocial experience of the COVID-19 pandemic in the MENA region using a syndemic approach. Sixty-three interviews were conducted with PLHIV between October 2020 and December 2021 in Tunisia, Morocco and Algeria. We conducted a thematic content analysis of the full corpus. Results from the syndemic framework showed that living with HIV in a pandemic context intersected with PLHIV’s socioeconomic conditions, exacerbating their overall disease burden. Interviewees’ experiences of the pandemic were closely associated with their HIV seropositive status and related socioeconomic constraints. To improve prevention, preparedness, and response for future pandemics, a global approach to health that incorporates syndemic and intersectional perspectives is needed. Such an approach would help to address the health, social and economic constraints that vulnerable groups face, and would ensure more effective and equitable public health responses.

Supplementary Information

The online version contains supplementary material available at 10.1038/s41598-025-29487-0.

Introduction

The 2020–2023 global COVID-19 pandemic impacted societies and healthcare, including access to HIV services¹. Penchansky and Thomas defined access to care as a five-dimensional concept² assessing how well healthcare systems align with patients’ needs: availability (match between service volume/types and patient needs), accessibility (geographic proximity, transportation, time, and cost), accommodation (organization of services—such as appointment systems, hours, and walk-ins—and patients’ ability to adapt), affordability (cost relative to income, payment capacity, and insurance), and acceptability (alignment between patient and provider expectations regarding ‘good’ care and ‘good’ patient behavior). Under this framework, access to health services extends beyond the availability of open facilities. A 2025 systematic review of qualitative and quantitative studies showed that the pandemic exacerbated existing barriers to access for HIV treatment, thereby impacting retention in care³. Previously, a 2020 modelling study estimated that the pandemic would lead to a 10% higher-than-expected HIV-related mortality rate in the subsequent five years in low- and middle-income countries (LMIC), mainly due to the interruptions in treatment access⁴. Moreover, a 2021 study conducted in people living with HIV (PLHIV) in Burundi during the pandemic showed that 11.7% of them faced antiretroviral therapy (ART) interruption during the first year of the pandemic⁵, the main associated factor being inability to travel to HIV health services⁵.

The Middle East and North Africa (MENA) region is one of the few regions where the incidence of HIV continues to increase. At the time of the study, the most recent UNAIDS data from 2018 showed that the annual number of people acquiring HIV was still rising, although some countries with relatively higher burdens, such as Morocco, were notable exceptions⁶. In other countries, such as Algeria, increases in incidence of more than 20% were observed⁶. The HIV epidemic in the MENA region is relatively low in the general adult population (< 0.1%) but is concentrated in key populations, with an incidence rate of 4.2% among men who have sex with men, 2.1% among sex workers, and 1.7% among people who use drugs⁶. The HIV testing and treatment cascade in MENA region in 2018 showed that 47% PLHIV knew their status, of whom 32% were on treatment, and 27% were virally suppressed. Specifically, in Algeria and Morocco, 86% and 76% of PLHIV knew their status, 93% and 86% of those were on treatment, and 68% and 91% were virally suppressed, respectively⁶. For Tunisia, data was lacking, but UNAIDS estimated that 62% of PLHIV had suppressed viral loads⁶. In the MENA region, stigma toward HIV is pronounced due to the interplay between religion, culture, and geopolitics⁷. Key populations, who account for the majority of PLHIV in the region, face high levels of stigma because of their gender identity, sexual orientation, sex work, or drug use⁷. Stigmatising and discriminatory attitudes exist not only among the general population but also among care providers, which can result in biased provision of care⁸. Stigma in health-care settings manifests in many ways, including physical distancing, excessive precautions, psychological abuse, ostracism, and denial of care⁸.

In their 2022 study, conducted in Sudan, Egypt and Tunisia, Cordie et al., found that globally, 63.7% of all diagnosed PLHIV in the three countries attended their scheduled HIV visits, 41.9% had limited access to care because of pandemic-related lockdowns, and 8.4% became less adherent to ART⁹. They also found that less educated persons and older PLHIV had a higher risk of ART interruption⁹. In addition, a multi-country study conducted in Burundi, Lebanon and Mauritania among community health workers providing support to different populations during the pandemic, showed that their greater concerns were for PLHIV, specifically their lack of access to ART and their lack of adherence to it¹⁰.

Changes in healthcare access because of the COVID-19 pandemic exacerbated social and territorial inequalities of health, leading to negative consequences for disadvantaged groups¹¹, mainly among those living with a chronic disease, such as PLHIV. Accordingly, in order to provide a comprehensive understanding of the pandemic among PLHIV and identify how to better prepare and respond to future pandemics in including their specific realities and needs, syndemic theory, developed by Singer in the 199610, would appear to be a pertinent choice. The syndemic approach highlights the affliction which two or more diseases create due to their concentrations and their interactions, the latter being driven by harmful social conditions^12,13. In Singer’s original theory, syndemics are defined by three principles: (1) two or more diseases cluster together in time or space; (2) these diseases interact in meaningful ways (social, psychological, and biological); and (3) harmful social conditions drive these interactions¹⁰. The syndemic theory highlights the key importance of the synergy between epidemics/diseases, social conditions, and structural factors in the health of individuals and populations. In other words, a syndemic consists of a collection of interlinked and mutually reinforcing epidemics, where diseases interact biologically and persist within a community or population due to detrimental social conditions and harmful social relationships¹⁴. Issues related to the syndemic effect of COVID-19 and HIV in Africa setting were rapidly highlighted after the beginning of the COVID-19 pandemic¹⁵. Indeed, PLHIV without viral suppression as well as comorbidities and low CD4 counts, are at greater risk for severe COVID-19, including hospitalization and death^16–18. Achieving and maintaining viral suppression through ART is crucial for reducing these risks, however as shown above, the rate of PLHIV with viral loads suppressed are below the UNAIDS target for most of the countries of the MENA region, and that, before the issues related to access to HIV services during the pandemic. Therefore, the interaction between HIV and COVID-19 combined with social conditions such as stigma, reduced access to healthcare for disease management, food insecurity, substance use, social isolation, depression and emotional distress of PLHIV could produce a negative synergistic impact on their health^19,20. HIV is highly relevant from a syndemic perspective, as it embodies the interplay between biological disease interactions and social determinants that collectively amplify vulnerability and disease clustering²¹.

To adequately explore the syndemic impact of COVID-19 on PLHIV, the comprehensive framework of social health psychology will be used^22,23. In this context, the present study aimed to explore the psychosocial experience of the COVID-19 pandemic among PLHIV in the MENA region using a syndemic approach.

Methods

EPIC-MENA design and study populations

EPIC-MENA (Etudes Pour évaluer l’Impact de la COVID-19 en milieu communautaire in French, which translates as ‘Studies to assess the impact of COVID-19 in community settings’ in English) is a community-based qualitative study conducted in five countries in the MENA region (Algeria, Lebanon, Mauritania, Morocco and Tunisia) during the COVID-19 crisis. It aimed to explore the impact and experiences of COVID-19 among PLHIV and key populations (men who have sex with men, people who use/inject drugs, sex workers) in terms of access to HIV health services and psycho-socioeconomic vulnerabilities, as well as the crisis’s impact on community-based organisations (CBOs) and community health workers.

EPIC-MENA was conducted within the framework of the international community-based research programme EPIC, which was coordinated by Coalition PLUS, an international union of CBOs (15 member organisations and over 100 partner organisations present in 52 countries) involved in the fight against HIV and viral hepatitis. EPIC was funded by the Agence Francaise pour le Développement. Briefly, EPIC was a mixed-method, multi-country community-based research programme which involved community-based workers and representatives from key populations in all elements of the study, from the design of the general protocol to the development of the data collection tools  , to the study’s implementation and data dissemination^24,25. The Coalition PLUS research team provided follow-up to each member or partner organisation who wished to adapt the general protocol and implement EPIC locally or nationally. The team also provided support on specific tasks and encouraged capacity-building through training. Each local organisation was completely free to decide its own objectives, methods, and target population(s) according to the organisation’s needs and priorities. EPIC was implemented in 32 countries, and involved 79 organisations, mainly CBOs. More detailed information on the development, implementation and sample sizes in the different studies of the EPIC programme is available elsewhere²⁶.

EPIC-MENA is the qualitative component of the EPIC programme in the MENA region. Interviewers were community health workers from partner CBOs or external consultants. They were recruited in all five participating countries. Local CBOs and Coalition PLUS closely collaborated to select the interviewers; all had previous training and/or experience in qualitative methods. In order to ensure data harmonisation and quality, a webinar on the study’s objectives and qualitative methods was conducted before the launch of the project. It also reinforced key ethical principles of research (e.g. informed consent and confidentiality) and trained interviewers to maintain neutrality and minimise social desirability bias. EPIC-MENA received a specific grant from the French ANRS-MIE (Emerging Infectious Diseases) agency.

Data collection, study setting and analysis

The data used in the present analysis were collected from October 2020 to December 2021 from interviews with 63 PLHIV in Tunisia, Morocco and Algeria as part of EPIC-MENA. Data collection was performed first in Morocco during the last quarter of 2020, then in Tunisia and Algeria during 2021. Importantly, COVID-19 vaccines were not yet available in Morocco during the study and the country was experiencing the peak of the second wave of COVID-19. Epidemic contexts and related restrictions were quite similar during data collection in Tunisia and Algeria (wearing a mask, inter-zone movement restrictions) and vaccines were available. Inclusion criteria were: being at least 18 years old, living with HIV positive, and agreeing to participate. For recruitment, we used consecutive convenience sampling, with a focus on gender diversity, to invite people who frequented the three CBOs to participate. The CBOs randomly proposed participation to PLHIV from their active patient files, either by phone or during their visits to the CBOs. Appointments were then scheduled with PLHIV who agreed to participate. In order to ensure confidentiality, interviews were either conducted face to face, in a private office space respecting current COVID-19 prevention measures (at the CBO or in another location that ensured confidentiality, according to the participant’s preference), or by telephone if current prevention measures meant in-person interviews were impossible or if participants resided far from the CBO or in an area too remote for the interviewer to reach.The lack of incentives to cover transportation costs within the project was an obstacle to recruitment.

The interview guide focused on PLHIV’s experience and perception of the COVID-19 crisis, and access to HIV care and prevention during the pandemic, including community-based support and services (see supplementary file).

The interviews were conducted in the Arabic dialect from each country and were audio-recorded. They were subsequently transcribed and translated into French for the joint analysis. Any potentially identifying information mentioned during qualitative interviews were removed during transcription. Once transcripts were verified, the audio files were deleted. Two psychologists (previously affiliated to the partner CBOs) trained in qualitative research methodology conducted the interviews in Algeria and Tunisia while a sociologist (not previously affiliated to the partner CBO) conducted the interviews in Morocco. Prior to participation, all participants received an information sheet outlining the study’s objectives, the nature and purpose of data collection, the identity of the data processors, their rights regarding data protection, and the relevant contact persons for exercising those rights. Oral and recorded informed consent was obtained after participants had read the information sheet or, in cases where they were unable to read or the interview was conducted by telephone, after it had been read aloud to them. Participants were explicitly informed that their participation was entirely voluntary, that they were free to express their views openly, and that there were no right or wrong answers. They were reminded that the purpose of the study was to explore their personal experiences and perspectives, which would be treated respectfully and without judgement.We conducted a thematic content analysis of the full corpus^27,28 to extract the main discourse themes and to find correlations and relationships between these themes. The analysis was conducted in two phases. First, we conducted a vertical analysis, which consisted in an in-depth examination of each participant’s discourse; this allowed us to identify nuanced themes within a participant’s experiences, which in turn helped us to better understand his/her specific situations and unique perspectives of the COVID-19 crisis. Second, we conducted a horizontal analysis, which involved comparing discourse themes across all participants. This analysis enabled us to identify broader patterns and commonalities, contributing to a more generalised understanding of the overarching themes within the entire dataset. This two-step analytical approach also helped ensure confidentiality by focusing on aggregated themes and cross-cutting patterns rather than individual narratives, thus preventing any potential identification of specific participants. The thematic tree was built in parallel with the content analysis. To do this, we used a continuous thematization approach, that is to say an iterative and dynamic process. More specifically, emerging themes from the horizontal analysis which were introduced into the tree could lead to different interpretations of the themes already present there, the result being that the tree itself continuously evolved. Moreover, these changes to the thematic tree reciprocally influenced the horizontal analysis²⁹. Two researchers specialised in qualitative methods and social sciences, and two others from the MENA region working in the CBOs participating in the study (a psychologist and community-based researcher) conducted the analysis using researcher triangulation²⁰.

Ethical approval

All methods were performed in accordance with the relevant guidelines and regulations. Ethical approval was obtained in each participating country: in Morocco, from the Ethics Committee of the Faculty of Medicine and Pharmacy of Casablanca, Ibn Rochd University Hospital Center (n° 09/21); in Algeria, from the Ethics Committee of the Annaba University Hospital Center; and in Tunisia, from the Ethics Committee of the Republic of Tunisia/Ministry of Public Health, Faculty of Medicine of Monastir (IORG 0009738 N82/ OMB 0990 − 0279). EPIC-MENA conformed with the European Union’s General Data Protection Regulation (GDPR).

Results

Among the 63 participants, 27, 22 and 14 were from Algeria, Morocco and Tunisia, respectively. Thirty-six were women (WLHIV), 25 were men (MLHIV) and 2 were transgender women (TWLHIV). Median age was 36 years (23–63 years old). The majority of participants reported living in uncomfortable or precarious economic situations.

Three main themes emerged to provide a better understanding of the COVID-19/HIV syndemic: 1) the experience of COVID-19 through the prism of life with HIV; this theme comprised two sub-themes: (A) the emotional impact of the pandemic and its interaction with HIV seropositivity and (B) PLHIV’s socioeconomic conditions and needs during the pandemic; 2) Access to HIV services during the pandemic; this theme also comprised two sub-themes, (A) the main difficulties encountered and (B) the main solutions found; 3) COVID-19 vaccination and HIV-related barriers to vaccination (see Fig. 1).

Fig. 1.

Thematic tree.

We discuss these main themes and sub-themes in the paragraphs below.

The experience of COVID-19 through the Prism of life with HIV

Subtheme A. the emotional impact of the pandemic and its interaction with HIV seropositivity (Table 1)

Table 1.

Quotes related to the “emotional impact of the pandemic and its interaction with HIV seropositivity” sub-theme.

Quotes	PLHIV Gender, country
Honestly, nothing bothers me, because I’m familiar with the disease (HIV), I’ve learned to live with it; apart from hospitalization, the rest… the disease… I live with it.”	WLHIV, Algeria
They say that Covid is a dangerous disease, but I consider Covid to be an ordinary disease compared to HIV.	MLHIV, Morocco
[The onset of] Covid 19 reminded me of the moment when I discovered that I had HIV; Covid 19 opened up an old wound, didn’t it? (…) it reminded me of when I [found out that I] had HIV, I’m not lying to you, I was given support by the association and XX, but I have doubts about even the smallest of things.	MLHIV, Morocco
It’s a fear linked to my HIV; since we’re a category with low immunity compared to the rest of society, Covid is more dangerous for us. Interviewer: Yes, that’s true. Interviewee: If a healthy person is infected - they can get over it - but us PLHIV, we’re in danger!	WLHIV, Algeria
Until now, when my husband comes home from work, he goes straight to the bathroom, washes and disinfects himself before approaching me for fear of contaminating me with Covid, especially as I have HIV and don’t go out. Interviewer: So you haven’t gone out at all since the start of this health crisis? Interviewee: I only go out a few times to visit my mother. Interviewer: So you’re either at home or at your mother’s, you don’t go out to do the shopping? Interviewee: No, my husband takes care of that. Interviewer: Yes, I understand, you only go out when you really have to. Interviewee: Yes, just to go to the hospital to get my treatment.	WLHIV, Algeria
Nobody can understand how I feel; they sympathize with me once or twice, but after that everyone gets on with their lives and forgets about others.	WLHIV, Algeria
Yes, I stayed there [i.e., at home] for four months without ever going out! Even on the balcony! (…) I didn’t see anyone, I didn’t contact anyone, not even my father! I only communicated with people through Facebook!	WLHIV, Tunisia
Interviewer: You learned about your HIV during the Covid pandemic, and you learned about… Interviewee: Yes, I suffered a lot from that, and everyone left my hanging [participant cries] (…) I found myself all alone, even for …er those [people] who I was there for [in the past], they weren’t there for me… it really broke me apart; I’d send my son to them to ask for some bread and they’d tell him they didn’t have any…	WLHIV, Algeria
I’m not going to lie to you, I needed someone to talk to or to complain to, because if you stay alone you’re not going to be able to; it’s like depression, Interviewer: Right. Interviewee: You’ll only see dead people. Interviewer: Right. Interviewee: Before, there was a group of us girls and women who lived with the disease [i.e., HIV]; we met each other for dinner; but with Covid all that disappeared.	WLHIV, Morocco
Sincerely, I was afraid of catching the virus, I thought I could get it at home, in the street; there’s absolutely nothing [to protect you from COVID-19]; people go around without protection; in Morocco it’s become dangerous (…), especially since the state doesn’t help us [i.e., PLHIV], we have to go out to work and support ourselves, and we wait for death. In the street, you [addressing the interviewer] know all too well how things are in the street; there’s no protection, people don’t respect sanitary measures.	MLHIV, Morocco

Participants described living with HIV during the COVID-19 pandemic in two contrasting ways, with HIV serving as a ‘reference’ disease to evaluate how severe the new disease was. Some considered COVID-19 to be less severe than HIV and saw it as an “ordinary” disease. This perception reduced the negative emotional (fear, anxiety) impact of the pandemic on them. For others, the fact that they were already living with HIV exacerbated their emotional distress during the COVID-19 pandemic. More specifically, the pandemic and the associated generalised fear of the disease, especially during the first year of the health crisis, led some PLHIV to relive the moment when they discovered their seropositivity, which in turn caused psychological distress and fear, mainly among those recently diagnosed with HIV. Some participants also expressed concern that the COVID-19 crisis would lead to involuntary exposure of their HIV serological status.

Furthermore, the fact that close relatives were afraid that their loved one (i.e., a study participant) would contract a severe form of COVID-19 – and even die from it – impacted participants’ and their family’s daily lives. PLHIV adopted specific strategies to prevent getting infected with COVID-19: they only left the house for health appointments; they limited social contact, even with their children—including when governments allowed it. They also adopted strict COVID-19 prevention measures at home with their partners and roommates. They greatly reduced social relationships, not only because of governmental measures, but also because they wanted to protect themselves better against COVID-19 given their HIV seropositivity.

Some participants who decided to stay in strict social isolation during the first waves of the pandemic reported that their family and friends could not understand why they did so. PLHIV who had disclosed their seropositivity to their loved ones put this down to a lack of awareness that PLHIV are more vulnerable to severe COVID-19 because of their seropositive status. For PLHIV who had not disclosed their seropositivity, this lack of understanding created a double burden: having to keep their seropositive secret and having to find alternative ways to justify their choice.

Furthermore, the interruption of social support provided by peers (i.e., PLHIV support groups) brought about by the pandemic, increased participants’ feelings of loneliness and reduced the opportunity to discuss their specific concerns and questions about how COVID-19 interacted with HIV. One participant expressed that she discovered her HIV status during the pandemic; social isolation measures meant she was left alone to cope without any social support or help.

Participants’ fear of COVID-19 infection was exacerbated by their perception that the rest of society did not stringently adhere to COVID-19 prevention measures in public places. PLHIV had control over their own behaviour and personal life, but not over others’ behaviour or their professional and economic obligations. Specifically, the need to provide food and money obliged them to go outside despite their perception of risk and insecurity about COVID-19. These constraints led participants to perceive that the COVID-19 pandemic was especially dangerous for disadvantaged groups.

Collective rumours in society maintained that PLHIV were dying because of COVID-19; this contributed to participants’ anxiety about contracting the disease.

There were no differences related to the country context in this sub-theme.

B) PLHIV’s socioeconomic conditions and needs during the pandemic (Table 2)

Table 2.

Quotes related to the ‘PLHIV’s socioeconomic conditions and needs during the pandemic’ sub-theme.

Quotes	PLHIV Gender, country
As I said, it depends on their way of life, because it differs according to the number of people living under the same roof, and they end up with tensions [in the family] and fighting.	MLHIV, Morocco
One day you eat and the next you don’t (…) if you find people who can help you, it’s fine, otherwise you won’t find anything to eat (…) as I’ve already told you, it had an impact on me professionally because I had a job and I stopped working during those three months of [the COVID-19 health] crisis; it was hard; I wondered how I was going to pay the rent and the essentials, water and electricity.	WLHIV, Morocco
My husband is the only one who works, and he had a hard time finding a job, especially last year. We ended up living with our parents, especially with the arrival of the baby and all. Interviewer: Right, so everyone went to live with their parents. Interviewee: Yes, he couldn’t provide for all our needs; we had problems and decided to split up, with each of us going to live with our [respective] parents.	WLHIV, Algeria
What do you want me to say? The needs are the same, the rent needs to be paid. I don’t work anymore because this illness [i.e., HIV] has affected me; only my sister works, before we helped each other for the rent, water and electricity: [but] the bills have piled up (…) you have nothing, you can’t eat…, you can’t do anything …all you have left is a rope that you tie around your neck, but you fear God [i.e., you don’t commit suicide]	WLHIV, Morocco
I was pregnant and had no immunity [i.e., because of HIV seropositivity], and when I spoke to my doctor, she forbade me to go outside of home (…). The first thing was the economic aspect, because my husband had stopped working, I only had 1000 dirhams [local currency] and lots of utilities to pay charges: water, electricity, rent and the cost of the [recent hospital] operation; on top of that I was pregnant. (…) As I’m ill [with HIV], I wasn’t able to ask anyone to help me. As soon as you tell them you’re ill, they ask you immediately to show the papers to prove it. Some of the things that happened! I won’t even tell you!	WLHIV, Morocco
I live all alone because I have HIV; so I didn’t have many contacts, which was scary, financially; I told you with the lockdown, it was too much, the crisis stopped the whole world; I only found XX [i.e., the local CBO]. They gave me food baskets to tide me over.	WLHIV, Morocco
I ate bread and drink water. Me and many like me. It was misery. It’s unbelievable! Everything was blocked, even contact with others! There was no solution. You know, people couldn’t even eat. I couldn’t even get food for them! All that on 50 dirhams… I’ve got three kids!	WLHIV, Tunisia
I ate, the priority was food for me and my children. I didn’t care about my treatment or my health. The most important thing was to eat. If I could afford it, I would go for treatment, otherwise I stayed at home.	WLHIV, Tunisia
Sometimes I tell him [i.e., her husband] I’m not going to the doctor anymore, and this travel money, I prefer to buy things with it, for the children; I won’t hide it from you [addressing the interviewer], I can’t see my children like this, I’m sick and may God give me the strength, I wanted to stop frankly…	WLHIV, Algeria

Most participants lived in socioeconomic precarity before the pandemic. This pre-existing situation prevented them from being able to safely navigate pandemic-related restrictions.

More specifically, restrictions led to the loss of jobs and incomes for some participants. The consequence was that they found it hard to meet essential needs such as food and housing during the pandemic. Many reported a frequent lack of food, leading to skipping meals and subsequent issues taking their ART without having eaten first. For some, a lack of income meant they had to go to live with their family when possible.

Increased precarity during the pandemic was also associated with their HIV-positive status. Prior to the crisis, some participants, mainly women, upon discovering they were HIV-positive, felt that they were not able to work and accordingly financially depended on their family/someone else. The pandemic and related constraints meant that this dependence created even greater economic difficulties for all concerned. Some participants were already socially and professionally isolated because of their HIV status before the pandemic started. This led to even greater difficulties for them to acquire food during the health crisis. In short, the pre-existing burden of living with HIV resulted in greater economic problems during the COVID-19 pandemic.

Mothers living with HIV faced the additional burden of familial responsibilities during the pandemic. The lack of means to provide food for their children was a major problem, and created competing priorities. For example, mothers prioritized finding food over their own basic needs, including HIV treatment.

The increase in precariousness combined with social isolation, while having to manage the same responsibilities and financial burdens, created a very high level of anxiety and stress among PLHIV, thereby deteriorating their mental health, especially among women and mothers.

In this sub-theme, there were no differences related to the country context; however, women across the three countries were generally overrepresented.

Access to HIV services during the pandemic

Subtheme A: the main difficulties encountered (Table 3)

Table 3.

Quotes related to “the main difficulties encountered” sub-theme.

Quotes	PLHIV Gender, country
We don’t know. Because with Covid, even the HIV department was dedicated to Covid patients for tests and all that. We went a year without any tests. They don’t give a damn about us! Undetectable or not etc… For example, if you come in for a physical problem, the equipment is [only] for use for Covid. Why? We’re human beings! Don’t we have the right to control our health? We have children, families, etc. Our children are victims. A change in medication, a stock-out situation in a context like this… tests have to be done to monitor our condition. We need to know whether the new drug is compatible with our bodies or not.	WLHIV, Tunisia
It’s the behaviour of the paramedical team that has changed; it’s not the doctor; I’m talking about the behaviour of the staff from the pharmacy manager to the nurses, they’re on edge because of Covid, always angry, even the pharmacy manager doesn’t give me enough medicine for three months; she gives me a quantity for two months. Before they were very nice and had a good working system, now they always get angry. I hate going to the hospital to pick up my medication.	WLHIV, Tunisia
I take the treatment, but not a sufficient quantity. For example, [usually] we get a 3-month supply, but they only gave me a one-month supply. And they say ‘’Come back every month”	WLHIV, Tunisia
INTERVIEWER: Did you take your [HIV] medication during the health crisis? INTERVIEWEE: I was afraid to go out and contact people. You know how miserable our situation is! We don’t have the money to get around by taxi or other means of transport. We use public transport like subways, buses and so on. We were scared! I chose not to travel to protect myself, especially as we’re PLHIV and our immune systems are weak, so Covid can kill us. The best choice is to stay at home. Between a rock and a hard place, we chose the toughest one!	WLHIV, Tunisia

The COVID-19 pandemic had a multilevel impact on access to HIV services for PLHIV. Although services in hospitals technically remained open, overall access to HIV care deteriorated, as infectious disease departments focused on COVID-19 care. ARV treatment was prescribed but no associated biological analyses (e.g., viral load) were performed, even when current treatment was modified. This led to greater anxiety among PLHIV. Additionally, the patient-healthcare provider (i.e., medical and administrative staff) relationship deteriorated, with many PLHIV feeling these professionals were rushing them or outright dismissing them; this further exacerbated their anxiety and sense of neglect.

Moreover, the pandemic impacted the availability of HIV treatments. To avoid stock-outs, ART prescriptions were sometimes written for a shorter period than usual.

This reorganisation of HIV services and treatment implied more frequent travel for PLHIV with all the associated costs, in a context where movement was restricted because of social isolation measures, and where PLHIV were especially fearful of COVID-19 infection. Additionally, public transportation was reduced during the crisis (in accordance with the restriction of movements), increasing the need to use private transport, such as taxis; some participants simply did not have the financial means to use taxis. All these elements led to HIV treatment interruption by PLHIV.

Starting at the beginning of the pandemic, the CBO partner in Morocco, implemented the delivery of ART to the homes of PLHIV (see the next sub-theme). Thus, the intense anxiety identified in other countries regarding accessing the hospital to collect treatment (fear of COVID-19 infection on public transportation and stress over finding the financial means to get to the hospital) was not expressed by Moroccan participants. In this sense, participants from Morocco did not have to make choices between competing priorities, such as using the little money available to travel to the hospital versus using it to feed themselves or their children. However, the lack of access to other HIV-related health services (e.g., viral load testing) or HIV-unrelated services was reported across the three countries.

Subtheme B: the main solutions found (Table 4)

Table 4.

Quotes related to the “main solutions found” sub-theme.

Quotes	PLHIV Gender, country
yes, I have a neighbour who always asks her husband to take me to the hospital; they both come with me to the hospital to get my medication; sometimes I leave my son with her daughter while she accompanies me.	WLHIV, Algeria
Interviewee: Yes, I continued to take it, I’ve been taking it since 2004. Interviewer: Right. Interviewee: I had to take it home during the lockdown. Interviewer: So, you didn’t find it difficult? Interviewee: I didn’t have any difficulties	WLHIV, Morocco
I live and work in Annaba, and as there was no need to travel, I contacted the XX association and the Pont Blanc Hospital in Annaba. They took care of me and gave me the treatment and I was followed up by an infectious disease specialist, Dr. XX. I didn’t have any problems… I was given the treatment twice, once for 3 months and a second time for 1 month.	MLHIV, Algeria

To face these difficulties, two types of support helped avoid ART interruption.

The first was overcoming barriers related to travel costs and less public transportation, through solidarity from people in one’s neighbourhood. Specifically, neighbours brought patients to the hospital in their own vehicle, or paid for taxis out of their own pocket. Some neighbours took care of the patient’s children while they went to the hospital. These strategies were mainly expressed among Algerian participants.

The second was community-based support provided by HIV CBOs. These organizations implemented several strategies to ensure PLHIV access to HIV treatment. In Morocco, community health workers brought ART directly to patients’ homes or sent it to their homes by post. In Tunisia, to address ART stock-outs in hospitals, some CBOs managed to officially procure medications themselves and dispense them to PLHIV, including through home delivery. In Algeria, CBOs played a crucial intermediary role between PLHIV and hospitals, ensuring continuous coordination in order to prevent any disruption to treatment access.

COVID-19 vaccination and HIV-related barriers to vaccination (Table 5)

Table 5.

Quotes related to the “COVID-19 vaccination and HIV-related barriers to vaccination” theme.

Quotes	PLHIV Gender, country
I won’t do it even if she [the doctor] tells me to, and in fact I’ve warned my husband, I’ve told him even if the doctor asks you to have an injection of some kind, we’ll say no!	WLHIV, Algeria
Interviewer: What are the causes that prevent you from getting vaccinated? Interviewee: Perhaps the vaccine is very strong in relation to our state of health, the vaccine reacts on our immune system after three days, so I thought that perhaps it weakens our immune system.	WLHIV, Tunisia
It’s just that I don’t want to be a guinea pig!	MLHIV, Algeria
Since I’m a PLHIV, it might be harmful for me or I might not be able to tolerate it…	MLHIV, Algeria
I take precautions as best I can (…) but as regards the vaccine, I don’t want to get it for the moment; I’m waiting for Dr XX’s opinion, she’s the specialist.	WLHIV, Algeria

In Algeria and Tunisia, participants’ attitudes to the COVID-19 vaccine and vaccination intention were mostly negative – COVID-19 vaccines were not yet available in Morocco at the time of the study. Three primary reasons for vaccine refusal were identified: (i) a general fear of the vaccine, (ii) concern about possible interactions between the COVID-19 vaccine and their HIV-positive status, and (iii) the fear of having to disclose their HIV status at vaccination centres. We look at all three reasons in the following paragraphs.

First, most participants, as well as their friends and family, generally feared the COVID-19 vaccine (not specifically related to their HIV status). Participants reported being afraid of side effects, particularly due to the rapid development and emergency approval of the vaccines, which they perceived as lacking sufficient long-term testing. This fear was exacerbated by the spread of misinformation and conflicting messages about vaccine safety, leading many to adopt a wait-and-see approach. Participants also reported distrust of certain vaccines, particularly those manufactured in China.

Second, some participants expressed concern about possible interactions between the COVID-19 vaccine and their HIV-positive status. Given the lack of clear medical guidance specifically addressing PLHIV and the suspension of peer support groups—which made it difficult to share their perspectives, experiences, and information on this topic—many were uncertain about the potential impact of vaccination on their immune system and overall health. The absence of tailored communication from healthcare providers as well as their limited capacity and availability during this period, including for PLHIV, contributed to this hesitancy, leaving some PLHIV feeling isolated in their decision-making process.

Third, participants expressed fear about having to disclose their HIV positive status at vaccination centres, which could potentially expose their seropositivity to others. This anxiety not only discouraged them from getting vaccinated but also prevented them from seeking reliable information on vaccine safety and efficacy for PLHIV, which in turn only deepened their hesitancy. However, some participants reported that if their HIV specialist advised them to get vaccinated against COVID-19, they would do so; this highlights the crucial role of a trustful patient-healthcare provider relationship as a key facilitator to encouraging vaccination among PLHIV.

To summarize, the COVID-19 pandemic emotionally impacted PLHIV in the MENA region in different ways. Some perceived COVID-19 to be less severe than HIV, which led to less anxiety related to COVID-19. For others, the pandemic heightened existing HIV-related emotional distress, triggered a recall of the trauma they experienced upon discovering they were seropositive, and prompted a fear of severe COVID-19, and even death. Social isolation was both a consequence of governmental restrictions and a personal choice to reduce exposure risk; this exacerbated existing feelings of loneliness and limited access to essential peer support.

Moreover, the pandemic intensified participants’ pre-existing economic and social vulnerabilities. Many lost their job and experienced financial hardship, leading to food insecurity, housing instability, and reliance on external (familial, neighbourhood-based, or CBO-based) support. The fact that they were HIV positive further contributed to their social precariousness, as it limited their ability to work and increased their dependency on family and other people during the pandemic, mainly for women. For mothers, competing pandemic-related priorities between caring for their children and managing their own health often resulted in their decision to neglect taking their HIV treatment. Overall, the COVID-19 pandemic highlighted the intersection between the health, social, and economic challenges facing PLHIV.

Despite the significant challenges faced by PLHIV in accessing HIV services during the COVID-19 pandemic, civil society - whether through families, CBOs or neighbourhood solidarity – provided essential support. CBOs played a crucial role in bridging gaps in healthcare access, and ensuring continuity of ARV treatment, while informal neighbourhood-based support was a facilitator for overcoming logistical barriers. This mobilization highlights the resilience and adaptability of community-driven responses in times of crisis which compensate for systemic shortcomings and reinforce the essential role of solidarity in healthcare access for vulnerable populations.

Lastly, COVID-19 vaccine hesitancy among PLHIV was driven by a combination of a fear of vaccines in general, distrust of specific vaccines, and the stigma-driven fear of disclosure of their HIV-positive status.

Discussion

This study shows how the HIV/COVID-19 syndemic increased socioeconomic and health vulnerabilities among PLHIV in the MENA region during the pandemic. Specifically, it highlights how harmful social conditions interacted with both diseases to increase socioeconomic and health vulnerabilities.

Our findings highlighted four key elements that help understand the synergistic experience of living with HIV during the COVID-19 pandemic in the MENA region, as follows: (1) the role of HIV seropositivity in interpreting the severity of COVID-19 disease, (2) the intersection of socioeconomic constraints related to HIV and COVID-19, (3) PLHIV concern about access to HIV services, and (4) the multiple barriers to COVID-19 vaccine uptake. We discuss these elements in detail in the following paragraphs.

Participants based their representations and interpretations of the severity of COVID-19 on their experience with HIV. This also influenced their emotional reactions to the pandemic. A qualitative study conducted among PLHIV in France during the pandemic highlighted the same mechanism of HIV as a reference point to observe and understand the pandemic³⁰. These results echo the theory of social representations, which highlights that new phenomena are interpreted and integrated through an anchoring process, whereby individuals rely on pre-existing experiences and knowledge to frame and understand novel situations³¹.

Our results showed that the pandemic highlighted and reinforced PLHIV’s existing psychosocial concerns about living with HIV. More specifically, participants described their pre-existing socioeconomic constraints due to their HIV status and the fact that these constraints were exacerbated during the pandemic, in particular increased social isolation, food and housing insecurity as well as mental health difficulties. This experience reflects findings from a scoping review focusing on the social impact of the COVID-19 pandemic on PLHIV in high-income countries³². Specifically, the review showed that a large proportion of studies reported that COVID-19 increased stress, anxiety and depression^33–40, and that the increase in stress was associated with their sense of social isolation and fragile economic situation⁴¹. Furthermore, just as was the case for our study in MENA countries, food insecurity was reported in several studies in that review^33–43. Finally, like our study, the review also highlighted the absence of social contact with peers as a key social issue for many PLHIV^44,45. These similarities between our results and those for high-income countries suggest that psychosocial issues related to living with HIV during the COVID-19 pandemic were similar across all regions of the world, and accordingly, need to be better addressed in public health policies for future pandemics.

In our study, women were overrepresented in the expression of mental health issues during the pandemic – as a consequence of the difficulties encountered, especially for mothers. Most quantitative studies conducted among PLHIV during the pandemic did not carry out gender-based analyses and therefore could not confirm or refute our observation regarding mental health symptoms among women. However, another study also showed that black women living with HIV in the US during the pandemic had an increase of mental health symptoms and a lack of resources, including difficulties in getting food, paying bills and transportation barriers⁴⁶.

Our study also revealed poorer access to and quality of pre-existing HIV services as a result of the reorganisation of hospital health services to focus on tackling the COVID-19 pandemic. This included a deterioration of the patient-health provider relationship, disruption to HIV viral load monitoring and associated examinations, and difficulties in procuring ART. Beyond these issues, it also became difficult for PLHIV to access specific and reliable information about the interaction between COVID-19 vaccines and HIV from healthcare providers. As a result, many did not get vaccinated, which in turn increased their risk of severe health complications if they contracted COVID-19. This synergy between all these elements further weakened the health of PLHIV and highlights the need, in future epidemics, to take such challenges into account when designing medical responses.

Less public transportation during the pandemic to collect ART, lockdowns, and the fear of being exposed to COVID-19, were also related to barriers of accessing HIV services. A systematic review of the impact of the pandemic on service delivery and treatment outcomes in PLHIV highlighted similar concerns and barriers⁴⁷. In our study, these barriers were tackled through social solidarity and mobilization by CBOs. Other studies showed that the COVID-19 pandemic was an opportunity to accelerate the implementation of differentiated service delivery models among PLHIV, including community-based delivery of ARV^10,46-50. A systematic review of the syndemic impact of the pandemic on HIV care delivery found similar findings to ours concerning the psychosocial impact (financial burden, fear of COVID-19, increased stigma, mental distress and psychological stress, lockdown-related barriers like food insecurity and transport disruption leading to missed ART appointments) and the decrease in HIV care access (ART stock-outs, poorer adherence)⁵¹.

Lastly, a large proportion of participants in our study were hesitant about or outright refused COVID-19 vaccination. This was related to the lack of tailored information for PLHIV, the fear that having to disclose one’s HIV status in vaccination centres would lead to stigmatization and discrimination, and to rumours that COVID-19 vaccination would lead to death in PLHIV. A systematic review and meta-analysis showed a global COVID-19 vaccine acceptance rate of 62% among PLHIV, with heterogeneity between high-income and low/middle-income countries⁵². It also showed that the vaccine acceptance rate in PLHIV in high-income countries was higher than in PLHIV in low/middle-income countries⁵². A similar acceptance rate among PLHIV was estimated in the MENA region (64.6%)⁵³. The most common reasons for hesitancy among PLHIV in low-resource settings included fear of potential adverse effects, scepticism about vaccine efficacy, the rapid development of the COVID-19 vaccine, and the perceived lack of effort to develop a cure or vaccine for HIV/AIDS⁵⁴. These results echo our findings. Another qualitative study in African settings highlighted the initiatives taken by CBOs to counter rumors and misinformation about the COVID-19 vaccine and to disseminate key public health information on this topic¹⁰.

In our study, the syndemic framework we used suggested that living with HIV in a new pandemic context intersected with PLHIV’s existing socioeconomic conditions, thereby exacerbating their overall burden⁵⁵. PLHIV’s experiences with COVID-19 in our study were closely related to their HIV status and associated social and economic constraints. Two systematic reviews also highlighted the complex and multifaceted impact of the pandemic on HIV medical appointments, adherence and treatment engagement, with various barriers being identified, including the fear of COVID-19 infection, economic constraints, disruptions in healthcare services, increased psychological disorders, and a rise in stigma and discrimination^3,47. Therefore, to improve prevention, preparedness, and response for future pandemics, a global approach to health that incorporates syndemic and intersectional perspectives is needed. Such an approach would help to address the health, social and economic constraints that vulnerable groups face, and would ensure more effective and equitable public health responses.

This study has several limitations. First, data were collected between October 2020 and December 2021. This relatively large period of time prevented us from being able to take into account in detail the specific impacts of different government measures on participants’ experiences. Participants interviewed in December 2021 may have taken a more reflexive stance about their feelings related to the pandemic compared to those interviewed in October 2020, who were experiencing the peak of the second wave without access to COVID-19 vaccines at the time of the interview. Second, our sample was based on convenience sampling of PLHIV who frequented the CBOs participating in the EPIC-MENA study; accordingly, they may have been more likely to live in social precarity than other PLHIV. However, as participants were engaged with CBOs, they had a minimum level of connection to HIV care and community support during the pandemic. PLHIV in social precarity who were not in contact with CBOs may have experienced even greater barriers to care and social support during the COVID-19 crisis. In future research, to strengthen the representativeness and generalizability of findings, sampling strategies could combine recruitment through CBOs with recruitment in healthcare facilities (both public and private) offering HIV care. Such an approach would allow for the representation of a more diverse range of living conditions and care trajectories, thus providing a more comprehensive understanding of the experiences of PLHIV across different contexts of social and healthcare engagement. Third, several interviews were conducted by psychologists working in the participating CBOs; this may have led to social desirability bias, especially concerning the support they received from CBOs during the pandemic. Fourth, the regional scope of the study did not allow for in-depth information on specific national-level dynamics, and especially the possible differences according to the “moment” of the epidemic (waves, vaccine availability, etc.). However, this study made it possible to identify shared issues and processes in the experiences of the pandemic among PLHIV, particularly the synergy between COVID-19 and HIV in these experiences. Finally, the very low participation of transgender people in the study did not allow for the identification of any specific elements concerning them in the analysis.

This study highlights how living with HIV through the COVD-19 pandemic exacerbated the psychosocial and economic vulnerabilities of PLHIV in the MENA region. Access to HIV care was hindered by the reorganization of health services and pandemic-related restrictions. Social and community-based solidarity played a crucial role in mitigating some of the challenges faced by some PLHIV. COVID-19 vaccine hesitancy was influenced by various factors, including a lack of information specific to PLHIV and fear of stigma. These findings reinforce the relevance of a syndemic and intersectional approach to better tailor public health responses to lived realities and a better integration of CBOs in national health systems to counterbalance gaps and lack of services adapted to the realities of PLHIV.

Supplementary Information

Below is the link to the electronic supplementary material.

Author contributions

MDC supervised the analysis and wrote the manuscript; OB and MDC coordinated the global EPIC MENA study; MDC, OB, NB, and EA analysed the interviews. ABM, MS and SB coordinated the local study. NL and LR coordinated the EPIC programme; NL revised the manuscript; MK and DRC supervised the study and revised the manuscript. All authors read and approved the final text.

Data availability

The datasets analyzed during the current study contain sensitive information from a vulnerable population and cannot be made publicly available in order to protect participant confidentiality. For more information about the dataset, please contact [marion.di-ciaccio@ird.fr].

Declarations

Competing interests

The authors declare no competing interests.