# The added value of community-based organisations in retaining people living with HIV (PLHIV) in the continuum of care in Mali

Marion Di Ciaccio, Mariam Yebedie, Kanuya Coulibaly, Diane Dondbzanga, Djénébou Traoré, Mamadou Cissé, Bintou Dembélé, Laura Rouane, Rosemary Delabre, Daniel Simões, et al.

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Marion Di Ciaccio, Mariam Yebedie, Kanuya Coulibaly, Diane Dondbzanga, Djénébou Traoré, et al. The added value of community-based organisations in retaining people living with HIV (PL-HIV) in the continuum of care in Mali. African Journal of AIDS Research, 2025, 24 (1-2), pp.19-29. 10.2989/16085906.2024.2434023. inserm-05471384

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# The added value of community-based organisations in retaining people living with HIV (PLHIV) in the continuum of care in Mali

Marion Di Ciaccio, Mariam Yebedie, Kanuya Coulibaly, Diane Dondbzanga, Djénébou Traoré, Mamadou Cissé, Bintou Dembélé, Laura Rouane, Rosemary M Delabre, Daniel Simões, Daniela Rojas Castro & Luis Sagaon-Teyssier

**To cite this article:** Marion Di Ciaccio, Mariam Yebedie, Kanuya Coulibaly, Diane Dondbzanga, Djénébou Traoré, Mamadou Cissé, Bintou Dembélé, Laura Rouane, Rosemary M Delabre, Daniel Simões, Daniela Rojas Castro & Luis Sagaon-Teyssier (2025) The added value of community-based organisations in retaining people living with HIV (PLHIV) in the continuum of care in Mali, African Journal of AIDS Research, 24:1-2, 19-29, DOI: 10.2989/16085906.2024.2434023

**To link to this article:** https://doi.org/10.2989/16085906.2024.2434023

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# The added value of community-based organisations in retaining people living with HIV (PLHIV) in the continuum of care in Mali

Marion Di Ciaccio<fnref n="1" />*, Mariam Yebedie<fnref n="2" />, Kanuya Coulibaly<fnref n="2" />, Diane Dondbzanga<fnref n="2" />,<fnref n="3" />, Djénébou Traoré<fnref n="2" />, Mamadou Cissé<fnref n="2" />, Bintou Dembélé<fnref n="2" />, Laura Rouane<fnref n="1" />, Rosemary M Delabre<fnref n="1" />, Daniel Simões<fnref n="1" />, Daniela Rojas Castro<fnref n="1" />,<fnref n="4" />, and Luis Sagaon-Teyssier<fnref n="4" />

**Background:** Retention in care of people living with HIV (PLHIV) is a crucial public health issue in Mali. Several barriers to retention have been highlighted, including socioeconomic status, gender, sexual orientation, HIV-related stigma, as well as organisational and structural barriers, such as public insecurity and sub-optimal public services. We explored the role of community health workers (CHWs) in PLHIV retention in care in Mali.

**Methods:** As part of the *Cascades Communautaires* project, eight focus groups (FG) and 20 individual interviews were conducted in 2021 among PLHIV at ARCAD Santé PLUS, a Malian community-based organisation (CBO). Participants included PLHIV who self-identified with key populations (KP) (men who have sex with men, female sex workers, people who inject drugs, and transgender women).

**Results:** Among the 60 PLHIV interviewed, 50% self-identified with KP. The median age and interquartile range were 35 years [28.5; 43.0] and 25% had a tertiary education. Four main themes emerged concerning CHWs' role in fostering retention in care: (i) Good patient-physician relationships in ARCAD Santé PLUS's structures; (ii) Social support between peers in the CBO; (iii) Peer educators (a sub-category of CHWs) as facilitators of continuous antiretroviral treatment distribution, and care and (iv) Free healthcare access in the CBO and financial support for transportation.

**Conclusion:** Peer educators play an essential role in PLHIV (general public and KP) retention in care in Mali in terms of psychosocial and logistical support. The non-judgmental approach of physicians working in CBO is also a major factor in retention.

**Keywords:** community-based organisation, HIV care engagement, peer support, PLHIV, retention in care

## Introduction

In 2023, there were an estimated 120 000 people living with HIV (PLHIV) in Mali, and 4 400 AIDS-related deaths. Of the former, an estimated 62% of PLHIV were aware of their positive status, 58% of whom were on antiretroviral therapy (ART). However, data on the proportion of PLHIV with controlled viral load among PLHIV on ART is unknown, reflecting just one of the many difficulties faced by the country's health system's. Besides health system problems, PLHIV in Mali face other barriers to HIV care, including stigmatisation and discrimination, socioeconomic inequalities, and currently underdeveloped decentralised HIV care in rural areas. Therefore, retention in care is a key factor in tackling the HIV epidemic in Sub-Saharan Africa. The

services offered by community-based organisations (CBO) are one of the key elements in fostering retention to care. ARCAD Santé PLUS is the primary HIV/AIDS CBO in Mali. Since 1996, it has provided HIV prevention, antiretroviral therapy, and care, and works in collaboration with the Malian Health Ministry. In 2020, a total of 28 878 PLHIV attended ARCAD Santé PLUS's 18 care centres.

The present analysis describes results from a cross-sectional qualitative study on PLHIV's perceptions and experiences of HIV-related care both within and outside ARCAD Santé PLUS, and especially their perceptions of community health workers (CHWs) working for ARCAD Santé PLUS, including medical staff and peer educators. Results from this study could provide valuable insights into mechanisms for encouraging adherence to and retention in HIV care.

<footnote n="1">¹Community-based research laboratory, Coalition PLUS, Pantin, France</footnote>

<footnote n="2">²Association pour la Résilience des Communautés pour l'Accès au Développement et à la Santé - ARCAD Santé PLUS, Bamako, Mali</footnote>

<footnote n="3">³Community-based research laboratory, Coalition PLUS, Dakar, Senegal</footnote>

<footnote n="4">⁴Aix Marseille Univ, Inserm, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, ISSPAM, Marseille, France</footnote>

<footnote>*Correspondence: mdiciaccio@coalitionplus.org</footnote>
## Background

Despite the progress made in HIV prevention and care worldwide, the HIV/AIDS pandemic is still a major public health concern in Sub-Saharan Africa (United Nations Programme on HIV/AIDS [UNAIDS], 2024). Specifically, the 90-90-90 targets set out for 2020 have still not been reached (Chipanta et al., 2022; UNAIDS, 2021).

Progress in HIV prevention is unequal in West Africa. Specifically, between 2010 and 2018, Equatorial Guinea, Gambia, Niger, and Mali saw an increase in new infections of over 10%, while new infections decreased by more than 40% in Burkina Faso and Burundi during the same period (UNAIDS, 2019). HIV prevalence in Mali is relatively low in the adult general population (0.8%), but much higher in key populations (KP) (i.e., transgender people (11.7%), men who have sex with men (MSM) (12.6%), sex workers (8.7%), people who inject drugs (3.9%), and prisoners (1.3%)) (UNAIDS, 2021, 2023)).

In 2023, there were an estimated 120 000 people living with HIV (PLHIV) in Mali, and 4400 AIDS-related deaths (UNAIDS). Of the former, an estimated 62% of PLHIV were aware of their positive status, 58% of whom were on antiretroviral therapy (ART). Unfortunately, data on the proportion of PLHIV with controlled viral load among persons on ART is not known, reflecting just one the Malian health system's many difficulties (Moore et al., 2016).

Retention issues in HIV programs, lack of adherence to ART, and lack of early detection and prevention of opportunistic infections have been identified as the main factors contributing to the virological failure in Sub-Saharan countries (Agegnehu et al., 2022; Kusemererwa et al., 2021; UNAIDS, 2021). Furthermore, a study on 12 Sub-Saharan countries showed that progress towards the global HIV testing and treatment cascade targets is being hampered by other factors such as socioeconomic inequalities (Chipanta et al., 2022). More specifically, low wealth indexes (O'Donnell et al., 2007), younger age, unemployment, and living in a rural area are all associated with a lack of access to HIV services, including testing and treatment (Chipanta et al., 2022), and by extension, with virological failure. However, access to HIV services is not only harmed by structural and individual-related factors; socio-cultural environments often leading to stigmatisation and discrimination have also been associated with poor access to health care (Ngcobo et al., 2022).

In addition to the aforementioned barriers, Mali faces specific socio-political issues that are damaging to the health system (Moore et al., 2016), including HIV care. One consequence of this difficult socio-political landscape is that the country is more vulnerable than others to infectious diseases outbreaks. Indeed, in 2017, Mali was ranked the 12th most vulnerable country in terms of infectious disease outbreaks worldwide (Moore et al., 2016).

Compared with other Western African countries, the Malian healthcare system suffers from a serious shortage of healthcare workers and much lower domestic health expenditure and infrastructure than, for example, the neighbouring countries of Niger and Burkina Faso (Moore et al., 2016). In general, the relatively higher dependence

of the Malian health system on foreign aid and domestic organisational issues often results in poorer working conditions because of staff attrition, medical equipment shortages and drug stock-outs, among other factors (Barber & Gertler, 2009; Carrier-Walker, 2011; Mæstad et al., 2010; Olang'o et al., 2010; Rajbhandary & Basu, 2010; Sagaon-Teyssier et al., 2020; Siukola et al., 2011; Stekelenburg et al., 2003). In this context, access to HIV prevention and care is even more difficult in Mali's public sector structures, which are much more exposed to the individual, structural, and socio-cultural barriers described above than in community-based organisations (CBOs) operating in the country (Sagaon-Teyssier, Kamissoko, et al., 2020; Sagaon-Teyssier, Yattassaye, et al., 2020). The substantial contribution of HIV prevention and care services provided by community-based organisations (CBOs) worldwide and the considerable social, economic, and psychological support these non-profit organisations provide to PLHIV, especially in low-income countries, have been a cornerstone in the fight against HIV/AIDS (Atuhaire et al., 2021; Pugh et al., 2022). The effectiveness of CBOs' activities in HIV programmes is largely thanks to the strong involvement of Community Health Workers (CHWs) (doctors, nurses, peer-educators, etc.) (Di Ciaccio et al., 2024) who often belong to the groups affected by HIV (e.g., peer educators). Peer educators play a crucial role in facilitating access to HIV prevention, care, and retention. They assist CBOs in reaching underserved populations. They also help to offset staff and service shortages in the public health system and are essential figures in providing HIV-related services that are specifically adapted to the needs of KP (Lefeuvre et al., 2015). Moreover, they build trust between KP and the CBOs themselves (Di Ciaccio et al., 2024). CHWs take on a variety of roles. In Sub-Saharan Africa, these roles include health education, health promotion, screening services, outreach activities, home-based care and other complementary services, treatment dispensation, and psychosocial support (Ngcobo et al., 2022; Sagaon-Teyssier et al., 2020).

However, the lack of financial support for CHWs, specifically peer educators, and a lack of recognition of the importance of their actions by other HIV stakeholders (Lefeuvre et al., 2015; Ngcobo et al., 2022) raise doubts about whether their role can be sustained over the long term. Furthermore, inadequate training of CHWs (specifically peer educators), poor communication between CHWs and public health HIV clinics, as well as poor integration of CHWs into the health care system are just some of the structural and organisational factors negatively impacting the work of CBOs (Ngcobo et al., 2022).

ARCAD Santé PLUS is the primary HIV/AIDS CBO in Mali (ARCAD SANTE PLUS, n.d). Since 1996, it has provided HIV prevention, antiretroviral therapy, and care to PLHIV and KP in collaboration with the Malian Health Ministry. Since 2021, it has been the principal recipient of the Global Fund to fight AIDS, tuberculosis, and malaria in the country. It provides services to one third of the PLHIV in Mali (ARCAD SANTE PLUS, n.d). More specifically, using a community-based approach, the services it provides are tailored to the specific needs of PLHIV from KP and from the general public. It also offers specific sexual health clinics for KP. In 2020, a total of 28 878 PLHIV used ARCAD Santé
PLUS's decentralised services in its 18 care centres spread throughout the country (ARCAD SANTE PLUS, n.d).

## Goal of the study

As part of the international *Cascades Communautaires* project, which aimed to provide greater insight into the services and support provided by CBOs in national HIV responses in the different socioeconomic contexts of Mali, Morocco, and Romania. Specifically, the present analysis investigated PLHIV's perceptions and experiences of HIV-related care in Mali and their perceptions of CHWs working for ARCAD Santé PLUS. The main objective was to provide valuable insights into mechanisms for encouraging PLHIV retention in HIV care in the Malian context.

## Methods

### Study design

*Cascades Communautaires* in an ongoing community-based research project launched in 2021 (Coalition PLUS, 2023). It is funded by *L'Initiative – Expertise France* and coordinated by Coalition PLUS, an international union of community-based organisations involved in the fight against HIV and viral hepatitis. Coalition PLUS comprises 16 member organisations and over 100 partner organisations in 52 countries. Through a process of self/inter-evaluation and of strengthening competences, the aim of *Cascades Communautaires* is to measure and improve the contribution made by three CBOs in three different epidemiological and socioeconomic contexts (Mali, Morocco, Romania) to access, care, and retention in treatment for PLHIV. As part of this project, we conducted a qualitative evaluation of the activities of the three CBOs in question – ARCAD Santé PLUS (Mali), ALCS (Morocco), and ARAS (Romania) – focusing on access to care and retention in care for PLHIV. We also implemented strategies to enhance their capacity to develop improved monitoring and evaluation tools, based on the specific needs of different PLHIV (KP and general public).

As part of this qualitative self/inter-evaluation, the research unit of ARCAD Santé PLUS conducted a qualitative study among PLHIV in Mali – some of whom were followed for HIV in the CBO, others followed in non-community-based setting – to explore their perceptions and experiences related to the HIV care they were receiving.

The *Cascades Communautaires* protocol was approved by local ethics committees in each of the three participating countries. In Mali, the protocol was approved by the Malian ethics committee (N°2021/230/USTTB and 2022/215/CE/USTTB).

### HIV care in Mali

HIV care in Mali's public health facilities is primarily managed through a network of decentralised centres (currently underdeveloped at the national level) integrated into the broader healthcare system. The latter comprises community health centres and private structures (level 1 facilities), referral health centres, outpatient treatment centres, and private or non-profit healthcare facilities (level 2 facilities); and finally, national hospitals, university hospitals

(CHU), and research institutes (level 3 facilities). All these facilities provide a range of services, including voluntary HIV/STI testing, antiretroviral therapy (ART), and counselling. In terms of community HIV services, while some are state-run, a large proportion are provided by ARCAD Santé PLUS.

### ARCAD Santé PLUS service model

ARCAD Santé PLUS offers a multi-step care model that includes HIV prevention, testing, treatment, and retention in care. Several of its 18 centres specialise in providing HIV services to KP. PLHIV can come to ARCAD Santé PLUS at any step of the CBO's proposed care model (i.e., at any step in their HIV care pathway). The prevention services the CBO offers include: (i) awareness raising and education on condom use and PrEP use, etc., (ii) HIV and other STI testing, (iii) counselling and ART initiation, (iv) linkage to care, and (v) retention in care. The latter includes therapeutic education, peer support-based ART adherence clubs (AC), clinical follow-up (e.g., ART distribution), and biological monitoring (e.g., viral load testing).

Services are provided by CHWs working for the CBO, including healthcare professionals (e.g., physicians), peer educators, and psychosocial counsellors; some of whom are members of a community at risk of HIV (e.g., peer educators). However, others are involved because they care about these communities.

### Data collection tools

#### Sampling frame

The present study included PLHIV in Mali from four KP (MSM, female sex workers (FSW), people who inject drugs (PWID), and transgender women (TW)) and from the general population (i.e., not self-identifying with a specific KP). This heterogeneous sampling frame ensured that vastly different experiences of HIV care could be collected on a large sample of PLHIV with different vulnerabilities and needs.

Participants from the general population were recruited through the healthcare provider responsible for their HIV care (either within ARCAD Santé PLUS or in state-run public health facilities). PLHIV from KP were recruited through peer educators from ARCAD Santé PLUS. Of the 60 participants, 54 and six were followed by ARCAD Santé PLUS and by state-run public health facilities, respectively.

#### Data collection

The study comprised eight focus groups (FG) and 20 individual interviews. Specifically, four focus groups were conducted among KP (MSM: *n* = 5; PWID: *n* = 5; TW: *n* = 5; FSW: *n* = 5) and four among PLHIV from the general population (*n* = 20) (one each with men, women, people with tertiary education, and young persons (i.e., < 17 years old)). Ten the 20 interviews were conducted among KP (MSM: *n* = 4; FSW: *n* = 4; PWID: *n* = 2) and ten in PLHIV from the general population.

An interview guide was used. The primary dimensions investigated were PLHIV knowledge of available HIV services and their experiences of HIV care in governmental and/or CBO structures. Needs and barriers to accessing HIV services were also explored. Participants also suggested strategies that could be implemented to improve their own HIV pathway. The FG and interviews were conducted by
a social anthropologist in Bambara (local language) in a private room in HIV support centres (i.e., ARCAD Santé PLUS or a public structure). All data were audio recorded and then transcribed verbatim into French for analyses.

## Qualitative analysis

A qualitative content thematic analysis was performed on all FGs and interviews (Bardin, 2016) to extract the main discourse themes and to subsequently find correlations and relationships between these themes. Specifically, we used the method outlined by Braun and Clarke (2006) which encourages the identification and refinement of themes based on the criteria they establish. This specific method allowed us to analyse the data, ensuring that each theme was thoroughly examined and aligned with the key principles of a qualitative content thematic analysis.

The analysis was conducted in two phases. First, a vertical analysis was conducted. This consisted of an in-depth examination of each participant's discourse to identify nuanced themes in an individual's experiences, with a view to acquiring a better understanding of the person's specific situation and perspectives of their HIV care pathway. Second, a horizontal analysis was conducted. This involved comparing discourse themes across all participants to identify broader patterns and commonalities, with a view to creating a more general understanding of the overarching themes within the entire dataset. The thematic tree was built in parallel with the horizontal analysis. To do this, we used a continuous thematization approach, which is 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; accordingly, the tree itself continuously evolved. Moreover, these changes to the thematic tree reciprocally influenced the horizontal analysis (Paillé & Mucchielli, 2013). The analyses were conducted by two researchers to ensure the quality and the reliability of thematization and the respect of the experiences shared by the participants.

Six themes were identified in participants' discourses about their motivations to remain in care. Of these, four were linked to HIV services and support provided by ARCAD Santé PLUS:

(i) Good patient-physician relationships in ARCAD Santé PLUS's structures;

(ii) Social support from peers in ARCAD Santé PLUS's structures;

(iii) Peer educators working in ARCAD Santé PLUS facilitate continuous ART distribution and care;

(iv) Free health access at ARCAD Santé PLUS's structures and financial support for transportation to appointments.

The other two themes were not directly related to community-based services and support:

(v) The perception that ARVs make it possible to stay healthy and not to look sick, and

(vi) The ability to easily manage one's medication.

Note that an important sub-theme also emerged under the first theme (i) listed above. It pertained to discrimination experienced in care outside the context of ARCAD Santé PLUS. The four HIV services and support themes and this subtheme are described next. Results are presented below according to theme and exemplified through representative quotes from participants. All steps of the analysis were conducted using Nvivo software®.

## Results

Among the 60 PLHIV included, 29 were female. The median age was 35 years [interquartile range (IQR) 28.5; 43.0], and 15 participants had a tertiary education.

## Good patient-physician relationships at ARCAD Santé PLUS's structures

This theme described the quality of the patient-physician relationship during HIV follow-up in ARCAD Santé PLUS's sexual health clinics (see Table 1). The community-based approach employed by the CBO, specifically the presence of peer educators and respectful physicians as well as other welcoming healthcare providers, provided PLHIV with a place where they could speak freely speak and without stigma.

Physicians working in ARCAD Santé PLUS were described as being attentive to patients' needs in terms of health, but also in terms of logistical constraints linked to the organisation of ART distribution. Physicians showed flexibility to ensure adherence to treatment, with examples including receiving patients outside scheduled appointments and providing multi-month ART dispensation according to patient context/needs. Participants felt that physicians were interested in their health in general (i.e., not just HIV). Participants also indicated that they received great support from physicians at the CBO following their emotional distress upon learning they were HIV positive and mentioned that they felt respected by these professionals.

The quality of the patient-physician relationship was complemented by the fact that a long-term relationship was built given that HIV is chronic. This led PLHIV to consider their physician almost as a friend. This closeness seemed to be one of the main differences between care provided by physicians in CBO and by physicians in non-community-based facilities. Indeed, participants highlighted this patient-centred approach to care as a motivating factor to adhere to and continue HIV treatment.

### 1a. (sub-theme) Discrimination experienced in care outside ARCAD Santé PLUS:

PLHIV satisfaction with their relationships with physicians working in ARCAD Santé PLUS contrasts with their description of care experiences of discrimination in non-community-based facilities. HIV disclosure (voluntary or through the sharing of medical records) in the latter setting
<table><caption>**Table 1.** Quotes of the theme Good patient-physician relationships at ARCAD Santé PLUS's structures</caption><thead><tr><td>Key populations</td><td>Quotes</td></tr></thead><tbody><tr><td>Female_General population_9</td><td>"Really since I've been coming here up until now, I take my treatment without any problem. They've never shown annoyance, they're always welcoming, they do their job properly. I've really had no difficulty"</td></tr><tr><td>MSM_7</td><td>"They're no longer just carers they're our family we've got to know one another until we've become brothers. Now we're friends it's no longer a patient-carer channel"</td></tr><tr><td>TW_2</td><td>"But when you come to ARCAD, you see people like you. Although the health workers there are trained for that so you can talk freely with them."</td></tr><tr><td>Female_Young people_2</td><td>"My doctor calls my mother all the time to ask after me. And when I come for my appointment, he asks what's wrong, if there is something I tell him, and he writes me a prescription"</td></tr><tr><td>Male_Young people_4</td><td>"With the carers here there's no problem. We laugh together. That's why when I go to other sites, I'm desperate."</td></tr><tr><td>Young people_4</td><td>"What's important when you're a pupil or student, when you come for an appointment and you say so, you get treated quickly and you go back to school. Sometimes it's the same doctor who takes your prescription upstairs so that things move faster."</td></tr><tr><td>Female_General population_3</td><td>"I spent all day and all-night thinking and crying. But the carers here consoled me until when I came here, I didn't want to leave again. I left so relieved."</td></tr><tr><td>Female_General population_3-1</td><td>"They tell us that if we want to travel, we should come tell them so that they give us enough medication because if you don't say so you can run out."</td></tr><tr><td>MSM_6</td><td>"There's respect at the clinic, that's what I liked"</td></tr><tr><td>TW_5</td><td>"The respect, the welcome and even if you have other infections that aren't HIV, they give you good advice and on top of that they do it discreetly; that's the most important"</td></tr><tr><td>TW_3</td><td>"Except if you lie about the ARCAD carers, apart from the pharmacy when you call any doctor it's respect and kind words."</td></tr></tbody></table>

was often accompanied by refusal by physicians to provide care, including HIV, as well as physical distancing and hostility toward PLHIV (see Table 2).

This discrimination and stigmatisation by physicians were also highlighted by frequent forced referral of patients from the general population to ARCAD Santé PLUS for HIV care. This forced referral was not only perceived as stigmatisation and/or discrimination; but it also led to PLHIV's fear of being stigmatised if they were to be seen entering an ARCAD Santé PLUS structure – which would inadvertently disclose their HIV status to their family and friends.

**Social support between peers attending ARCAD Santé PLUS structures**

Participants reported that the social support they found at ARCAD Santé PLUS's structures played a crucial role in their adherence to and retention in care (see Table 3). More specifically, two forms of social support were highlighted: (i) PLHIV peer support groups (whether KP or the general public), and (ii) support provided by peer educators working as volunteers or employees in ARCAD Santé PLUS.

First, the primary benefit of PLHIV peer support groups was that they instilled trust and participants felt that they were free to socialise and could freely express their needs and concerns. These groups enabled PLHIV to anticipate

HIV-related stigmatisation and to learn from other people's experience of stigmatisation by friends or family members. Furthermore, these groups helped to create strong links between PLHIV. Sharing experiences reinforced the feeling of being "in a family" at ARCAD Santé PLUS and of belonging to a community. Both PLHIV from KP and those from the general population highlighted the importance of these groups.

Second, peer educators working in ARCAD Santé PLUS were important to participants. They were seen as sources for personal advice and as persons who really listened to the participants' concerns and needs. Some peer educators visited participants at home if the latter requested it.

**Peer educators as facilitators of the continuity of ART distribution and care**

This theme described how the collaboration between peer educators and physicians facilitated retention in care (see Table 4). Specifically, to ensure the continuum of HIV care (i.e., consultations, ART adherence, and biological follow-up), peer educators from ARCAD Santé PLUS reminded patients about forthcoming clinical appointments by contacting them via telephone. Participants appreciated receiving these reminders. They also highlighted that peer educators always helped them find a solution if they
<table><caption>**Table 2.** Quotes of the theme "Discrimination experienced in care outside the CBO"</caption><thead><tr><td>Key populations</td><td>Quotes</td></tr></thead><tbody><tr><td>Female who injects drugs_4</td><td>"I was in XX but what made me come here was because I got mad, there was too much discrimination"</td></tr><tr><td>Male_General population_5</td><td>"The Dr who was supposed to see me because we knew each other since high school but instead of welcoming kindly at the announcement only he was afraid of me. He hid even, he avoided me."</td></tr><tr><td>Female_General population_1</td><td>"Even during my delivery because my pregnancy had gone beyond its term, they said that it would be a caesarean. But because the word HIV is on me, the people who were supposed to do the operation ran away to hide. Since being at the health centre since the morning I only went into surgery at 5:40pm. I saw no-one, I was left to walk around inside"</td></tr><tr><td>Male_General population_4</td><td>"After seeing me, he called the secretary directly and yelled at him over why he had said he was there. He reprimanded him"</td></tr><tr><td>MSM_3</td><td>"Some MSM don't want to come here to the clinic because other people can see them"</td></tr><tr><td>FSW_4-1</td><td>"People are more scared of acquaintances than the health workers. That's why many stop their treatment for fear of being discovered by an acquaintance"</td></tr><tr><td>MSM_1</td><td>"If other people see ARCAD Sida [renamed ARCAD Santé PLUS] they'll say it's a PLHIV"</td></tr><tr><td>TW_1</td><td>"One day my cousin told me that she wanted to go into labour even though her pregnancy wasn't at full term. I asked why, she said that she was walking, and she saw me go into the home of PLHIV, do you have AIDS, I told her no I was running an errand for my mother. She said ah, otherwise I almost went into labour"</td></tr><tr><td>Female_General population_3</td><td>"Often, I was even afraid of coming to collect my medication because I had acquaintances here. (...) Because when you leave, you will come across acquaintances and people ready to tell others (...) Others say: "ah they're there, when I go collect my medication if they see me, they'll tell everyone that I have the disease. (...) For me each time I left, I saw an acquaintance, whether that person knew me or not, I knew them so that's why I was lost to follow-up."</td></tr></tbody></table>

<table><caption>**Table 3.** Quotes of the theme Social support between peers attending ARCAD Santé PLUS structures</caption><thead><tr><td>Key populations</td><td>Quotes</td></tr></thead><tbody><tr><td>Female_General population_5</td><td>When we come to the centre, the fact that as patients we come together to talk, that takes a big weight off. The discussions we have here at CESAC (Centre for listening, care and support) [the main clinic of ARCAD Santé PLUS] we can't do the same at home.</td></tr><tr><td>Female_General population_8</td><td>The information we're given is a big relief. Often, I go to the association's headquarters too, that helps you forget about things.</td></tr><tr><td>Male_General population_7</td><td>The discussion groups, many come to the centre, but they leave relieved. Many don't come for the meal, but because they meet with people like them everyone talks about their problems, and we try to find an answer to those problems. And you'll find that many see a positive outcome from those answers.</td></tr><tr><td>MSM_7</td><td>So, I always went to the clinic, it's like my family. That's where I meet people like me to talk because we have the same ideas, the same views, we have the same problems, so we share them.</td></tr><tr><td>MSM_1</td><td>the peer educator listens to us, advises us. If we have problems, he comes out for us comes to our home</td></tr></tbody></table>

found it difficult to attend their appointments. This was particularly true for FSW, who often had to travel long distances or needed to stay for a time in distant places for work reasons. Accordingly, they risked missing their clinic appointments.

Overall, KP were more likely than PLHIV from the general population to encounter issues concerning transportation or the necessity to move away for work. This led to frequent barriers to attend their HIV appointments. To overcome this problem, peer educators proposed

at-home delivery of ART and sent ART to the PLHIV's new temporary address.

**Free health access at ARCAD Santé PLUS and financial support for transportation**

This theme highlighted the importance of economic factors in PLHIV retention in care (see Table 5). In Mali, treatment and follow-up for HIV is free of charge for PLHIV in CBOs and in state-based facilities. However, an added value of ARCAD Santé PLUS identified by participants was the financial support they received for transportation to and from the
<table><caption>**Table 4.** Quotes of the theme Peer educator as facilitator of the continuity of the ARV dispensation and care distribution and care</caption><thead><tr><td>Key populations</td><td>Quotes</td></tr></thead><tbody><tr><td>Male who injects drugs_3</td><td>the personnel welcome people kindly, I haven't had any problems. But if I'm held up, the IDU leader comes out to bring my medication to me.</td></tr><tr><td>FSW_2</td><td>when I leave the Dr asks me, do you feel well, what problem do you have etc. Even if you can't make it to the appointment, the last time I was held up I explained that to him, he said no problem and that he would send someone to my home to give me my medication.</td></tr><tr><td>FSW_1</td><td>a huge difference huh [compared to public] because at the association they take the time to talk with you. And when you're late, even if you don't know what day your appointment is they call you to ask what's going on XX come in</td></tr><tr><td>FSW_4</td><td>I'm really pleased, even if you're late and you're pill box is nearly empty they call you to ask if you can't come in they take the time to come to your home</td></tr><tr><td>FSW_3</td><td>really between the carers and me there's no problem. Even last month I called to say that I couldn't come to the appointment they said no problem and the worker came to my home to bring me my medication.</td></tr><tr><td>TW_1</td><td>I had some difficulty because I had a contract at the gold mine. My medication should have run out before my return because at the mine there's no coming and going. I called the worker, and I explained the situation. He said no problem, that he'd send my medication. And he did, he wrapped up the medication and he went to the station, he wrote my name on it. And when the bus arrived, I went to pick up my medication</td></tr></tbody></table>

<table><caption>**Table 5.** Quotes of the theme Free health access at ARCAD Santé PLUS and financial support for transportation</caption><thead><tr><td>Key populations</td><td>Quotes</td></tr></thead><tbody><tr><td>Male_general population_10</td><td>"At CESAC you come in and you leave without paying."</td></tr><tr><td>FSW_4</td><td>"When you go to the association, even if you wait in line but once you're seen, they give you everything for free (...) "if you have transport to get there but no transport to get back, they pay for your return trip."</td></tr><tr><td>Female_general population_1</td><td>"But often I had transport to get there but not back. When I came in, I'd say to the major that I was there, but I had not transport for the return. He paid my return."</td></tr><tr><td>FSW_4</td><td>"Even if I say I don't have transport they say, "take a taxi we'll pay". I really appreciated that"</td></tr></tbody></table>

CBO when they needed it. This support was important given the difficult socioeconomic situation of most participants. Apart from the monetary aspect, participants highlighted that the fact the CBO provided them with financial support for transport indicated that health providers cared about them, and that this was another motivation for adherence to treatment and retention in care.

## Discussion

The *Cascades Communautaires* project aimed to provide better insight into the services and support provided by CBOs in three different countries with three different epidemiological and socioeconomic contexts (Mali, Morocco, and Romania). The findings from the present analysis, which focused on data from Mali, echoed international findings on CHWs' role in PLHIV retention in care. Accordingly, they added to the currently scarce evidence for West Africa.

Three key results emerged from our analysis. First, participants reported that the quality of the patient-physician relationship at the ARCAD Santé PLUS CBO's structures was a motivation to adhere to HIV follow-up, echoing findings elsewhere (Coleman et al., 2007; Préau et al., 2004; Raj et al., 2018; Schneider et al., 2004; Tolley et al.,

2022). However, this finding contrasts with those from a study evaluating community-based efforts to improve HIV care engagement among vulnerable populations in several sites in the United States of America (Raj et al., 2018). In that study, community-based interventions did not lead to an increase in HIV care engagement. However, the study also found better retention in care of participants who had benefited from community-based interventions (Raj et al., 2018). This suggests that community-based structures could improve HIV care engagement by providing personalised support, as such support would help maintain a close relationship with the PLHIV and help provide better support and management of their medical follow-up (Raj et al., 2018). Indeed, our study findings confirm this hypothesis.

Second, the respect and acceptance of individuals for who they are by staff at ARCAD Santé PLUS were particularly important elements for participant adherence to HIV treatment and retention in care. Social support provided by peers (peer support groups) at the CBO was also considered a facilitator in this regard. In contrast, participants also mentioned their experience of discrimination by doctors in non-community-based HIV care structures. More specifically, PLHIV suffering from HIV-related stigma and those belonging to key populations
must not only deal with HIV-related stigma but also with prejudice against their identities and/or behaviours that could lead to an exacerbation of their experiences of stigma and discrimination (Kennedy et al., 2013; Larson et al., 2016). In this context, a community-based approach of HIV care, free of stigma and discrimination, may be the better choice to maintain PLHIV in HIV care, just as was observed in our study.

Third, participants highlighted the support provided by peer educators in terms of listening, advice, and ART supply logistics. Peer educators played an active role in social support and in HIV care engagement (appointment reminders, home delivery of ART, etc.). Free health care access at ARCAD Santé PLUS and financial support for transportation if needed were also reported as facilitators of HIV care adherence and retention. These benefits of peer educators align with findings from other published studies. For example, three studies conducted in Indonesia, South Africa, and Australia among PLHIV showed that peer-based care navigation was beneficial (Iryawan et al., 2022; Krulic et al., 2023; Steward et al., 2018). More specifically, peer educators were seen as facilitators to HIV testing, linkage to care, uptake of and adherence to ART, as well as retention in care. The same studies highlighted that key elements of peer navigation and support were (i) providing help in overcoming stigma and feelings of shame through education, and (ii) acting as role-models for living successfully with HIV. Increasing HIV knowledge and awareness, providing emotional support, addressing structural barriers to accessing services – such as navigating complex bureaucracy and PLHIV’s lack of trust in health care services – were also cited (Iryawan et al., 2022; Krulic et al., 2023; Steward et al., 2018). The important role of peer educators in supporting and facilitating engagement in HIV care among KP was also described by PLHIV in Tijuana, Mexico (Rocha-Jiménez et al., 2021). In the same study, surveyed physicians positively appraised peer educators’ work (Pitpitan et al., 2020).

More generally, a scoping review on the impact of community-based ART interventions targeting KP living with HIV, showed that the outcomes of these interventions were at least as good as those achieved in public healthcare facilities in terms of the full HIV care continuum (i.e., from HIV testing to viral load suppression and retention in care) (Ibiloye et al., 2022). Our results are also consistent with a literature review of the community-based approach to HIV care in low- and middle-income countries, which showed the important contribution of community-based ART programmes in PLHIV uptake of ART and retention in care (Mukherjee et al., 2016).

In a similar socioeconomic and geographical context to our study, a quantitative study conducted in Burkina Faso showed that, overall, PLHIV satisfaction with the HIV care they received was sub-optimal (Ouédraogo et al., 2023). However, their analysis also showed that receiving HIV care in CBOs (as opposed to state-run public facilities) was associated with better satisfaction (Ouédraogo et al., 2023). This would suggest that providing HIV services (including ART distribution) in CBOs, as is the case with ARCAD Santé PLUS, is a valid way to support PLHIV engagement in HIV care in West Africa.

In the literature, missed HIV care appointment rates are a significant factor of non-adherence to ART (Coleman et al., 2007; Rastegar et al., 2003). Other factors cited include poor provider engagement, concerns about stigmatisation, transportation, and financial barriers (Coleman et al., 2007). Results from our study showed that these barriers can effectively be managed by CHWs and CBOs.

More generally, our results highlight the ability of CBOs to provide an empowering environment for PLHIV by addressing socio-structural problems that hamper HIV responses. More specifically, CBOs help provide (i) services that are free of HIV-related stigma and discrimination, (ii) a supportive legal environment and help with access to rights, (iii) a gender equal society, and (iv) coaction across various development sectors (Stangl et al., 2022). A recent study using structural equation modelling confirmed that an unfavourable societal environment negatively impacted the effectiveness of HIV programmes and HIV outcomes. More specifically, it showed that countries with environments fostering stronger societal empowerment had fewer estimated new HIV infections and fewer AIDS-related deaths (Loncar et al., 2023).

Finally, our results suggest that CHWs’ (whether medical or non-medical roles) approach in ARCAD Santé PLUS was person-centred care (PCC), and that this approach was essential to retaining KP in care, especially in a context where minorities faced specific barriers to follow-up. PCC is considered essential to ensuring quality healthcare (Epstein et al., 2010). This is further promoted in the statement “nothing about us, without us” (Delbanco et al., 2001), a notion which has guided the mobilisation of HIV communities in fighting the HIV/AIDS pandemic since the outset. PCC can be defined as a holistic approach to promoting health which considers all elements of an individual’s well-being (physical, mental, sociocultural, and spiritual) and which focuses on reducing disease prevalence through mutual respect between the stakeholders involved (Mezzich et al., 2010). Moreover, PCC is seen as one means to help achieve the World Health Organization’s 90-90-90 targets (World Health Organization [WHO], 2016). A qualitative study which compared and contrasted PLHIV’s and healthcare providers’ representations of PCC in a low-resource setting (PCC is almost exclusively implemented in developing countries) found the following shared representations: (i) it tackles financial issues such as transportation; (ii) it provides care in a community setting to facilitate access; (iii) it fosters care that is free from stigma and discrimination, and (iv) it addresses issues concerning human and time resources with a view to having enough time to dedicate to each patient (Abboah-Offei et al., 2020). In terms of representations which differed between PLHIV and healthcare providers, the same study found that PLHIV’s representations of PCC were centred on the psychosocial dimension of their well-being whereas those of providers mostly centred on the biomedical dimension of patients’ well-being. The authors found that these different focuses led to difficulties in the implementation of PCC.

The shared representations of PCC highlighted in Abboah-Offei et al.’s (2020) study reflect our findings. Specifically, participants in our study reported receiving
financial support when it was needed for transportation to an ARCAD Santé PLUS structure for follow-up, and that ART could be delivered to their homes if they were not able to attend a follow-up appointment. Furthermore, retention in care was facilitated by appointment reminders. Participants also mentioned the stigma-free approach at ARCAD Santé PLUS and they felt that healthcare providers in the CBO took the necessary time to listen to them. In terms of the different focuses of PCC representations by PLHIV and healthcare providers outlined by Abboah-Offei et al. (2020) (i.e., psychosocial vs. biomedical), we found that ARCAD Santé PLUS's global approach covered both these focuses. Therefore, we can consider that the approach used by ARCAD Santé PLUS to implement PCC is one of differentiated service delivery (DSD) (WHO, 2021). According to WHO recommendations, DSD aims to adapt how HIV services (frequency, sites, types of healthcare workers, and types of services needed) are provided and to consider the specific needs of subpopulations, such as key populations, and their contextual settings. A recent rapid systematic review documented DSD outcomes related to HIV treatment adherence and suppressed viral load in Sub-Saharan African countries. It showed that in situations where a comparison was provided, DSD-based HIV care was comparable to or better than retention in traditional healthcare services; in situations where no comparison was provided, retention in HIV care generally exceeded 80% (Long et al., 2020). In regard to viral suppression, all the studies in the review comparing DSD with traditional healthcare services reported slightly greater suppression in DSD programmes; in situations where no comparison was provided, viral suppression exceeded 90% (Long et al., 2020). Despite a study in Ghana showing that the fear of stigma and of discrimination is a key barrier to PLHIV engaging in the community-based model (Adjetey et al., 2019), our results suggested that the ARCAD Santé Plus HIV-care model could be added to the current inventory of various tools to implement DSD in PLHIV. Our results also highlighted that PLHIV feared being seen entering the CBO's premises, as this could inadvertently disclose their status. However, CBO-based care remains the best way to access HIV care due to the general discrimination against PLHIV in non-community-based facilities and the tailored peer support provided by CBOs.

## Limitations

This study has several limitations. The *Cascades Communautaires* project assessing the quality of CBO services provided was self-evaluated by the concerned CBOs themselves. Therefore, in the case of Mali, the qualitative study of PLHIV's perceptions conducted as part of this self-evaluation almost certainly led to social desirability bias, given that the research team investigating the issue is part of ARCAD Santé PLUS. Furthermore, 54 of the 60 participants interviewed were followed at ARCAD Santé PLUS for their HIV treatment. This too may have impacted the findings from the thematic analysis. Having said that, without the support of CBOs such as ARCAD

Santé PLUS, it would have been almost impossible to reach a diverse range of PLHIV, and especially those belonging to KP. Finally, we had very few data on HIV care engagement in Mali in non-community-based services to compare our results.

## Conclusions

The quality of the relationship with physicians and all CHWs (including peer educators) and the fact that ARCAD Santé PLUS provided a stigma-free environment were the two most important factors in HIV care retention in our study population. The PCC approach employed by ARCAD Santé PLUS is part of the DSD framework promoted by the WHO to increase HIV care engagement. Ensuring the sustainability of this CBO's services in a context of ongoing political and security challenges in Mali is crucial if the HIV epidemic and retention in care are to be effectively tackled for the most vulnerable populations.

## Author contribution

MDC supervised the analysis and wrote the manuscript; MY and KC analysed interviews; KC conducted the interviews; DT transcribed the interviews; LST MC and BD coordinated the local study. LR DS and DRC coordinated Cascades project; DS RD and LST contributed to the manuscript revision. All authors read and approved the final manuscript.

## Competing interests

All authors have no competing interests to disclose.

## Funding

L'Initiative – Expertise France
Grant number: 19SANIN222.

Each team in the countries involved in the project received its own separate budget. Among the affiliations of the authors of this paper, this includes Coalition PLUS and ARCAD Santé PLUS.

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