Community Perspectives on Optimizing Community Health Volunteer Roles for HIV Prevention Services in Kenya and Uganda

Abstract

Community health workers (CHWs) play a significant role in supporting health services delivery in communities with few trained health care providers. There has been limited research on ways to optimize the role of CHWs in HIV prevention service delivery. This study explored CHWs’ experiences with offering HIV prevention services [HIV testing and HIV pre- and post-exposure prophylaxis (PrEP and PEP)] during three pilot studies in rural communities in Kenya and Uganda, which aimed to increase biomedical HIV prevention coverage via a structured patient-centered HIV prevention delivery model. In-depth semi-structured interviews were conducted from November 2021 to March 2022 with CHWs (N = 8) and their clients (N = 18) in the Sustainable East Africa Research in Community Health (SEARCH) SAPPHIRE study. A seven-person multi-regional team coded and analyzed data using a thematic analysis approach. CHWs offered clients PrEP and PEP refills, adherence monitoring, counseling on medications, and phone consultations. Clients reported CHWs maintained close interpersonal relationships with clients, and demonstrated trustworthiness and professionalism. Some clients reported that community members trusted the authenticity of CHWs, while others expressed concerns about the CHWs’ ability to maintain confidentiality, and felt that some community members would be uncomfortable receiving HIV services from them. CHWs valued the expansion of their role to include prevention services but expressed concerns about balancing competing demands of CHW responsibilities, income-generating activities, and family roles. CHWs were well accepted as HIV prevention service providers despite contextual challenges. CHWs need ongoing training support. Establishing structures for remunerating CHWs in health systems could improve their performance and retention.

Introduction

Progress toward reducing HIV prevalence in sub-Saharan Africa has been substantial, but the region remains disproportionately burdened by the global pandemic.^1,2 Despite the effectiveness of HIV pre- and post-exposure prophylaxis (PrEP and PEP) for reducing HIV acquisition risk,^3

–9 their widespread uptake remains suboptimal in the region.^5,10 Structural and health care-related barriers to broader coverage include staff shortages, limited equipment, and expanded outreach needs, which impede integration of HIV prevention into routine health services and overall utilization; further, men and women face different barriers, including stigmas, gendered health-seeking norms, inaccessible locations, or clinic hours of operation.^5,10,11 Fostering targeted solutions and innovative strategies to break down barriers to effective HIV prevention services are needed. The involvement of community health workers (CHWs) in HIV prevention is integral to achieving widespread impact and creating sustainable change by helping to extend the reach of HIV prevention services.

Ever since the 1970s and growing with successful scale-ups in Brazil, Bangladesh, and Nepal during the 1980s, plus a more global resurgence in the early 21st century in East African nations such as Kenya, Uganda, and Rwanda, CHWs have been an integral part of many health care systems in low-, middle-, and high-income countries.^12

–16 Current CHW roles typically include disease surveillance, immunization, hygiene education, peer education in reproductive health, home-based care, nutrition, and palliative care. In many places, the focus on communicable disease treatment, prevention, and surveillance is currently shifting toward a greater focus on scaling up services for managing non-communicable diseases such as diabetes and hypertension, in addition to behavioral change and psychosocial support interventions.^{12,15

–20} In high-income countries, CHWs also help reduce health inequity, especially among marginalized populations, partly by guiding people from these communities through complex health care systems.¹⁴

As detailed in a thorough review of the evidence by Perry et al., CHW benefits proved themselves repeatedly across multiple health domains from the late 1990s through the mid-2010s.¹⁶ Studies have reported that CHW programs reduced childhood undernutrition by one-third in a Mozambican population of over 1 million people²¹ and from 19% to 4% in a Vietnamese region with a similar population size^22,23; and increased exclusive breastfeeding by over 5× in a population of mothers exposed to CHWs.²⁴ Through work in pediatric illnesses treatment, researchers attributed a 36% reduction in child mortality from pneumonia and 24% overall to CHW intervention in seven different countries.²⁵ Randomized controlled trials also showed CHW-led women’s groups had a 37% reduced rate of maternal mortality in both South Asia and Southern African countries.^26,27 The potential of CHWs to contribute to HIV transmission reduction efforts through boosting adherence, linkage to care, and treatment engagement has been noted in both the United States and developing countries.^28,29 Beyond gains in child and maternal health, CHWs have also extended vaccination coverage, HIV literacy and stigma-reduction efforts, malaria eradication through encouraging the use of bed nets, and increased access to primary health care and directing people to more cost-effective care centers.^12,16,20 CHWs conduct both formal visits and more spontaneous engagement with community members while going about their daily lives in the community. The mixed formality of their role is due to the somewhat unique position many CHWs have within their and their peers’ social support networks.^19,20 A scoping review of service delivery models in Africa noted that adolescent girls and young women in South Africa particularly appreciated community-based service delivery models for HIV prevention services, for example, in hair salons, a setting where delivery by CHWs may have particular advantages.¹¹ Stakeholders in Tanzania view this unique position of CHWs as giving them a key role in engaging community members in HIV prevention, education, and initiation services.³⁰

Despite this record, some health care policymakers have been documented to regard CHWs as a temporary solution to fill health care system gaps, rather than as an essential component of the health care system,¹⁶ although others have felt them to be uniquely positioned for care provision due to the trust community members place in them.^30,31 A growing consensus, including among global bodies such as the World Health Organization (WHO), agrees that together CHWs and health systems comprise the context and the mechanisms by which positive health outcomes can be produced.^32

–36 Indeed, “CHWs often act as multipurpose development workers involved in a variety of community-based work beyond health.” Overall, CHWs act to bridge communities to the larger health care system or, on a more individual level, help guide individuals through complex health care systems.^14,20,37 They are often the frontline workers in Ministry of Health-directed service delivery.¹⁵ These attributes provide the opportunity for scaling up HIV prevention services at the community level. Many health care providers in Kenya and Uganda already agree on the benefits of community-based interventions to enhance PrEP uptake.³⁸

Key research questions remain regarding how to optimize CHW roles, scale up well-considered task-shifting models to CHWs, and strengthen CHW roles in HIV prevention services in low-income community settings.^14,16,30,31 Pressing concerns for a sustainable scale up of CHWs include how to provide sufficient training and support, adequate recognition, and compensation; how to sustain their motivation and retention; and how to formally integrate CHWs into formal health care systems and foster standardization across different contexts.^20,31,39 Additional challenges have included ensuring effective supervision and coordination, training in the use of digital health technologies, as well as in addressing gender disparities and community acceptance.^20,40

The supports for and requirements of CHWs vary by national setting. In Uganda CHWs typically have primary or secondary-level education but no formal health care training; formal requirements are minimal since the role is largely voluntary. Training of CHWs is largely project-based and organized by the Ministry of Health in collaboration with non-governmental organizations (NGOs) and other partners, and as a result, often tied to specific health campaigns.⁴¹ Since Ugandan CHWs primarily work on a voluntary basis, they typically do not receive a regular salary. However, they sometimes receive occasional financial or material incentives, such as stipends from NGO partners, training allowances, or items such as t-shirts. These incentives are usually limited and depend on the funding and partnerships supporting specific health projects. In Kenya, CHWs, currently referred to as community health promoters (CHPs), are now required to have at least a secondary education. CHPs in Kenya undergo a structured and extensive training supported by the Ministry of Health in partnership with implementing partners.⁴² CHW reimbursement has recently shifted to more structured payments: the government of Kenya has recently allocated around Ksh.3 billion (approximately USD 20 million) to provide stipends for its CHPs.⁴¹ This initiative ensures that each CHP receives a monthly stipend, which varies by region but generally aims to offer sustainable income for their health outreach efforts.⁴³

Within this context, the Sustainable East Africa Research in Community Health (SEARCH)-SAPPHIRE study (NCT04810650) sought to evaluate the effectiveness of an expanded role of CHWs in the delivery of its HIV “Dynamic Choice Prevention” (DCP) package of services in rural communities in southwestern Uganda and western Kenya. In the intervention arm, patients have a choice of product, HIV testing mode, and location of services, whether facility-based or offered by CHWs in community settings.⁴⁴ Here we use data from an embedded qualitative study to examine the experiences of CHWs engaged in the intervention, and the perceptions and experiences of clients receiving services from CHWs. We draw upon a framework proposed by Vareilles et al.,⁴⁵ which posits that stable and supportive cultural circumstances, when aligned with health services, provide a context in which CHWs’ role can be optimized; their role is optimized via self-efficacy, self-esteem, fair treatment, and a sense of professional duty. In this article we explore the perceived impact of CHW-led HIV prevention service delivery, seeking to identify where CHWs in the SEARCH DCP study were most successful, and where opportunities exist for further improvement.

Methods

Study context

The first phase of the SEARCH-SAPPHIRE study (NCT04810650) conducted three pilot randomized studies to compare biomedical prevention uptake among those receiving the DCP intervention or the standard of care in the antenatal clinic (ANC), the outpatient clinic (OPD), and the community. The DCP intervention offered flexibility and choice for participants, including the following: (a) prevention product choice [condoms, HIV PrEP and PEP], (b) refill duration choice—the option to select duration of their refill (1–3 months), (c) testing choice—the options of HIV rapid blood test and oral-based self-testing (HIVST) with clinician-assisted testing in cases where participants need help during self-testing, and (d) service location choice (home, clinic, other community locations, and phone/virtual visits). Providers offered integrated reproductive health services, and an assessment of barriers to uptake and adherence, with personalized plans to address challenges. Inclusion criteria for all pilot studies were HIV negative status, age 15 years or more, and current or anticipated HIV risk. The study intervention components included training providers on offering prevention product choice, and responsiveness to clients’ desires, and provision of mobile phone access to clinicians (24 h/7 days/week) for all clients. The intervention was delivered by clinical officers and nurses in the ANC and OPD and by CHWs who facilitated intervention by clinical officers from the local Ministry of Health facility.

Data collection

We conducted semi-structured in-depth interviews (40–90 min in length) from November 2021 through March 2022 with a cohort of participants who were purposefully sampled for balance by sex, community, and age from the DCP studies (ANC: n = 19; OPD: n = 19; CHW: n = 18), and a cohort of health care providers engaged in the studies (n = 26) including CHWs (n = 8), who were purposively sampled for balance by cadre and community. After consenting the interviewees, our gender-balanced team of trained qualitative researchers (native speakers of the local languages Runyankore and Luo) administered in-depth semi-structured interviews, which were audio recorded, in private and comfortable locations convenient for the participants. Audio recordings were transcribed and translated into English for analysis. Interviews explored experiences with the intervention, preferred prevention or treatment methods, CHW interactions within the community, life and community contexts, and additional discussions with peers about HIV, HIV prevention, and HIV stigma.

Data analysis

The research team members who gathered data in the local languages Dholuo [L.O., A.O., T.M.O.A.] and Runyankore [C.A., F.A.] also engaged in data analysis and confirmed interpretations of the data to which additional team members contributed [J.J.-P., C.S.C.]. This ensured that the translation and interpretation of the data respectfully captured the nuances of participants’ voices and local cultural understandings. The locally based team [L.O., A.O., T.M.O.A., C.A., F.A.] transcribed and translated data and [with J.J.-P.] coded data using Dedoose software, after data review and group development of an inductive coding framework by the full team [with C.S.C.]. The full team then used thematic analysis to generate analytic memos across emergent themes and reviewed these in an interactive workshop [with C.S.C.] to consolidate and refine the results presented here.

Ethical approval

The University of California San Francisco Committee on Human Research, the Ethical Review Committee of the Kenya Medical Research Institute, the Makerere University School of Medicine Research and Ethics Committee, and the Uganda National Council of Science and Technology all approved this study. All study participants provided written confirmation of informed consent to participate in the study.

Results

In presenting our results, we first review the overall scope of practice of CHWs as reported by participants in our study. Then we focus on the positive attributes of the CHWs before moving on to role challenges and dilemmas reported by CHWs and their clients. We close with recommendations offered by CHWs and other study participants.

CHW scope of practice delivering the HIV DCP package

CHWs fulfilled a variety of service delivery tasks and also provided support and counseling to clients. CHWs described offering HIV testing (distributing self-test kits or offering rapid tests), lubricants, condoms, PrEP, and PEP. CHWs were also contacted by clients for refills and when switching prevention methods, as this female participant narrated:

… I call and tell them that I need a [PrEP] refill. That’s when they come and bring mine. I may also tell them when I want to change from one prevention method to another and they bring the medicine on time. (Female client, age 22, Uganda)

CHWs also referred clients to the health facility for services, including management of sexually transmitted infections (STIs), family planning, and counseling for gender-based violence. A male CHW shared his experience of referring a client, who was hiding her situation of domestic violence, to the health facility.

That situation I narrated to you before about the domestic violence – She used to tell me her situation, but I realized that she was covering up the domestic violence. When I invited the study nurse, she was able to reveal her situation to him and she remained in the study. (male CHW, age 55, Uganda)

Overall, both client and CHW perspectives on the CHW role closely aligned, with clients knowing when to contact CHWs for services, and CHWs knowing what is within their mandate and what must be referred out.

CHWs also provided ongoing counseling support for clients, to ensure that their clients adhered to the prescribed HIV prevention regimens. CHWs and their clients described how they promptly addressed challenges and concerns, such as side effects, daily adherence, and HIV-related stigma. Study participants also reported that CHWs conducted follow-up visits to ensure that clients did not miss their appointments for HIV prevention service refills. CHW support for clients included both “on-foot” and phone call tracking and follow-ups. The phone call consultations specifically aimed to check on the progress of their clients using prevention methods such as PrEP, monitoring its usage or discontinuation, and ensuring that the clients met their next appointment. The CHW services also extended to offering HIV literacy (information-sharing) and PrEP/PEP adherence support and counseling, often augmenting and explaining the information that had been given to clients by facility-based clinicians. As one male CHW narrates, “The participant did not understand the provider’s explanation and the CHW noted and clarified to the participant how they should take their pills.” (Male CHW age 55, Uganda)

CHWs’ roles also included identifying individuals who were at risk of HIV infection within the community through conducting risk assessments, which guided them in supporting client decisions on the appropriate method of HIV prevention.

When they come and tell me, “I am likely to be at risk in the coming week,” I ask them if they think the risk is going to be continuous or a one-time risk or how many days do you think it will take. I also ask them why the participant is requesting PEP yet they said the partner was coming the next week, or his girlfriend who was working from somewhere else is visiting for about one month. So I ask them to explain well how long the partner will spend there, and this helps me to determine which method to give the participant (Male CHW, age 41, Uganda).

CHWs thus play multifaceted roles in the delivery of HIV prevention services, ranging from providing ongoing support to individuals in need and those already using prevention services to facilitating access.

Positive attributes of CHWs in HIV prevention

Many participants positively appraised the CHWs who served their needs. The positive attributes that clients felt that CHWs showed included, first, the ways CHWs developed personalized professional relationships with clients—in other words, how they offered client-centered care—and second, the ways in which CHWs alleviated structural barriers in the health care system for clients.

Accessibility, privacy, and convenience

Participants highlighted the convenience of accessing HIV prevention services from CHWs within their communities. Unlike traditional health care facilities, CHW proximity allowed easier access, particularly for individuals facing transportation barriers and challenges at the health facility, such as long queues and long waiting times. This participant described both worry about confidentiality at facilities and also barriers to access, and felt services from a CHW offered more privacy as well:

I thought in the hospital, doctors were many, and in case I would turn HIV positive, then they could share amongst themselves. Secondly, the distance from home to the hospital is far; hence, going to the hospital on foot was a challenge. The other thing is I could go to the hospital after trekking, then find a long queue, and end up taking a long time at the hospital before being attended to. That demotivates me from going to the hospital. When KEMRI came up with this study approach whereby the community health volunteer could bring the services to the community, and we discussed my health issues – just the two of us without involving even my parents – it is a good initiative (Male client, age 20, Kenya).

The flexibility of CHW-led services, including home visits, was appreciated by participants as it accommodated their schedules and preferences, and helped them to engage in HIV prevention services including prevention drug refills:

Things have been made easier for us since the organization came. For example, when you go to a government facility, you sit and spend long and still go without medicine, but when you go to the study CHW and tell her how you feel, she immediately gives you the medicine or calls the health providers and in as short time the medicine is delivered (Female client, age 20, Uganda).

Community trust and confidentiality

Trust emerged as a recurrent theme among the study participants. Participants expressed their assurance that the CHWs had received training in offering CHW services, as recounted by a client in Kenya: “They have gone through some training as well and that is why they have been mandated to come and offer such services to the community members” (Male client, age 37, Kenya). Community trust was also nurtured by the CHWs’ consistent presence in the community and this facilitated rapport-building and mutual understanding between the CHWs and their clients. As one CHW noted, “they know I am a community member and I cannot bring anything harmful to them” (Male CHW, age 28, Kenya). A male participant narrates his experience with the CHW building comfort when discussing sensitive topics on sexuality:

Well, first, when we interacted with the community health volunteer for the first time, he used some terms, which I was not comfortable mentioning. For example, he used terms such as ‘condom’ in the local language – ‘Rabo yunga’ – when you have sex. You know people feel uncomfortable talking about those things, especially terms around sex. However, as he continued to talk to me about those terms during the home visit, I got used to mentioning them confidently as well. Currently, I can use those terms as well without any fear so long as I get help from the CHW. (Male client, age 20, Kenya)

The CHWs’ adherence to maintaining confidentiality reassured their participants of their privacy, fostering a safe environment for discussing HIV-related concerns.

…and the beauty about it is that I have never heard about my discussion outcome whether in public meaning she keeps it a secret. She has visited me on several occasions, but I have never heard of any information leaked out. (Male client, age 41, Kenya)

…He assured me of confidentiality and that everything would be between the two of us. Therefore, I also tried to investigate whether my mother could have heard about it because mothers are very good at getting to hear information – same to my father – but I realized that my mother was not even aware of it. My mother was also on the program on her own as an adult, and I am on my own as a youth. Therefore, I got encouraged about it because it was a secret between the provider and me. (Male client, age 20, Kenya)

Through their actions, CHWs made an effort to maintain the privacy of their patients by disguising their motives during household visits, avoiding any conversations about other clients, and ensuring that the drugs were properly packaged to avoid their visibility and inadvertent disclosure of a client’s prevention method use. “When you come to pick up medicine, she gives you a polythene bag in which to pack the medicine very well and go home” (Female client, age 20, Uganda). This significantly contributed to mitigating stigma associated with HIV.

Personalized support

The participants appreciated the personalized support offered by the CHWs, which went beyond mere service provision. CHWs demonstrated empathy and cultural sensitivity in addressing the unique needs and concerns of their clients related to HIV prevention. They provided a “safe alternative” to facility-based testing and services to clients who were afraid of standard-of-care services, as in the following account of a young man who had previously refused HIV testing at clinic, but after a home visit from a CHW, decided to take up PrEP:

You know, as youths, we can spend with a girl of unknown status, and this makes us suspicious that we might turn positive on an HIV test. When they [the CHW] came [to his house]… I was tense because of that, but according to how they talked to me, I gained confidence and I got encouraged to take a test. The result turned negative then they told me that they could give me medication [PrEP or PEP] free of charge… (Male client, age 20, Kenya)

In another account, a woman described mistrusting providers at clinics and relying on a CHW for confirmation that PrEP was safe and that it was for prevention, not treatment:

The main problem I had was that we might be deceived… for example, we had been hoodwinked whenever we go to the hospital for so long about family planning services. Some providers would dupe the client that they have been injected with a family planning method yet they inject you with procaine [a local anesthetic]. … I was like, “These people might trick me into taking ARVs without my intention.” I wondered about this for a long time, but one of the community health volunteers from our village was using this medication. I went and inquired more information from her […] Then she was like, “No, this is not ARVs it is PrEP.” From there, I felt relieved and continued using it. (Female client, age 39, Kenya)

Counseling sessions conducted by CHWs offered participants opportunities for comprehensive risk assessment, offering information on available HIV prevention options, and the flexibility to switch prevention options. Participants expressed feelings of empowerment and agency in making informed decisions around the available HIV prevention strategies. CHWs also displayed a high level of flexibility in following up on their clients within the community and being able to find them at all possible locations. One client noted, “A person coming to your home and they do not find you there but make an effort to look for you? — it is not an opportunity that everyone has. He took the initiative to look for me and find me wherever I was” (Female client, age 40, Uganda). Another said, “The providers know what to do. For first, they make an attempt to check on you — how you are progressing on with medication — and that is why she called me” (Female client, age 32, Kenya).

CHWs likewise cited intrinsic motivational factors such as the genuine desire to help others and commitment to the well-being of the community. They reported a profound sense of satisfaction derived from making a difference in the lives of others and described moments of fulfilment when they witnessed positive health outcomes among community members, as in the following account:

What has been motivating me is that I would like the community members to have a good life. I usually aim at this good life and nothing else. I do not look sideways but I am concentrating on my job to ensure that we live a healthy life… the livelihood of the society becomes stable if we have no ill health. (Male CHW, age 55, Kenya)

Overall, CHWs play a critical role in alleviating barriers to accessing HIV prevention services. They serve as a bridge between the communities and health care services, ensuring that everyone has equal access to HIV prevention irrespective of their socioeconomic status or other preexisting barriers such as stigma.

CHW challenges, dilemmas, and concerns

CHWs and their clients reported multiple competing demands, dilemmas, and other concerns that impede the full optimization of CHW roles. As related by CHWs, their challenges fall into three categories. The first is the way the demands of work balance with compensation; the second concerns challenges in the work itself. The third results from client attitudes and worries about confidentiality and stigma as related to the CHWs’ outreach efforts. Below, we discuss these challenges first from the point of view of CHWs themselves before moving on to funnel in client perspectives, which challenge their receptivity to CHW services.

CHW dilemma with fulfilling CHW roles versus other competing demands

CHWs work with the health centers to provide services such as mobilizing communities to attend immunization services, and doing sanitation and hygiene inspection. In addition, they may engage in other public health activities through other implementing partners or NGOs in the community. This consumed their time and did not correspond to the remuneration they received, which was regarded as small in comparison with the effort invested:

First of all, the money we receive is very little and yet the time we invest is a lot for example during immunization, we move checking the immunization cards (to see) if women have taken their children for immunization or not and if these children have received a complete dose, we move around the village inspecting sanitation and hygiene, if people have made utensil racks, and this takes a lot of time in that even the money you are given can’t be enough as transport to cover the whole community, this makes a person demotivated in doing their work. (Female CHW, age 42, Uganda)

Additionally, the CHWs needed time to do their own income-generating activities to augment the meagre remuneration they got for their CHW work. These demands lowered the CHW motivation. The male CHW in a previous quote narrated his own experiences, highlighting the demands of his family and the issue of time to do their personal enterprises despite being well motivated to do their CHW roles. The COVID-19 lockdown presented an opportunity for them to maximize their roles since they then had support from family members at home:

Yes, they give some money, but what we invest in this work is much more, especially in terms of time. We cannot run our personal enterprises. What is helping at the moment is the COVID lockdown. The children were home, and there were no school fees being paid. But when they resume school, we are pushed in a tight corner meaning the services don’t move well. I have people to leave at home like now so it’s easy. When I make some money here, I can hire a worker and then work together with my children. So if the incentive is improved, then things will get better. I really like this CHW work, it’s a good job because we are helping people. The organization (IDRC) trained us, they invested money in training us. Recently, we were in Village A, and we received training there. (Male CHW, age 55, Uganda)

CHWs faced geographic barriers to providing services

Some CHWs faced geographic barriers due to the terrain of some villages and some distant households despite being situated in the same community. Yet they often lacked financial support to pay for the transportation needed to get to the hard-to-reach areas. In some instances, CHWs had to spend out of pocket to meet the transport costs. “No, I depend on the SEARCH provider at the clinic. He has a motorcycle, but sometimes he is also occupied. Without him, I must find my own means of reaching the participant because if I wait for him then I will delay the participant. So, I end up hiring a bodaboda to take services to the participant.” (Male CHW, age 55, Uganda)

Client challenges: Doubts about CHWs’ ability to maintain confidentiality

In addition to the obstacles faced directly by CHWs, client challenges with CHW outreach also complicate CHWs’ work. Some clients often questioned the CHWs’ ability to maintain confidentiality and safeguard their personal information. Young people were particularly concerned that CHWs could reveal their sexual health information to their parents, but similar feelings may apply to other family members such as partners or stepparents since CHWs live near their clients, being personal acquaintances, neighbors, or even family members. “Well, at first, it was a challenge because when someone who is well conversant with you wants to know more about your personal matters and secrets, it was a real concern for me” (Male client, age 20, Kenya). No participant expressed any actual experiences of confidentiality breach. However, trust in the CHWs was sometimes eroded by past experiences of a CHW’s breach of confidentiality or vicarious experiences of other community members who had experienced this in the past, as in the following report:

There was a case where one CHW almost caused chaos in a given family. They shared with the household head; when he moved to the other place, he again shared with the man’s wife the other side. Then the man was like, “How come we share with him yet he again going to tell the other person? This is not in order.” I witnessed that, they were almost disagreeing with the CHW. (Male client, age 58, Kenya)

As a result of these confidentiality concerns and experiences, participants sometimes expressed a preference that the CHW be of one gender rather than another, aligned with concepts of who was most likely to breach confidentiality. Female CHWs were less preferred by clients who held the belief that women love to gossip and that female CHWs are not likely to maintain confidentiality. “In good faith, I would like the CHW to be a man because women these days are also not trusted, the news might spread in the whole village so at least it should be a man or CHWs should be two, both a man and a woman so that you go to the one you prefer” (Female client, age 20, Uganda).

Fear of stigma and discrimination due to CHW services

Clients expressed concerns that a potential breach of confidentiality would lead to stigma and discrimination within their communities. These concerns were characterized by the fear of being labeled as HIV positive or engaging in high-risk behaviors. The fear of gossip and rumors circulated by the CHWs within the communities prompted reluctance to the CHW services among some clients. Some participants expressed anxiety about CHW visits in their households, with concerns about what neighbors might infer from the CHWs’ frequent visits: “When they walked into my house and asked to test me, I feared what the neighbourhood would think of the visit. In my mind I knew they would think of me as HIV positive, being visited by the health care providers” (Male client, age 41, Kenya).

CHWs revealed that the fear of stigma affected their own motivation as clients who were identified as at risk of HIV displayed some discomfort sharing their information with the CHW. While the CHWs referred such clients to the health facility for further assessments, this does not always seem to satisfy the desire of a CHW to do a good job. “… The challenge was that she preferred to open up to the clinician who is a lady other than the opposite sex. When she came to the hospital, she first approached me and when I asked to help her, she preferred the female provider than a male. Then I referred her to the clinician who is of the same gender” (Male CHW, age 35, Kenya).

From these examples, we see that client challenges around CHW outreach become an obstacle for the CHWs themselves, adding to the previous two concerns about balancing competing priorities and logistical challenges in reaching clients.

Recommendations offered by CHWs

A final area—though a top priority—to consider in optimizing CHW roles are suggestions that CHWs themselves have raised to accomplish that goal. These suggestions fall into two broad categories, performance management and logistical support; remuneration falls under this latter category. Under performance management, CHWs mention trainings and mentorship, feedback, and clinician support as key ways to improve their performance. In terms of logistical support, CHWs mentioned increased incentives for their work and, importantly, money specifically for essential tasks such as transport to clients and airtime on the phone.

Performance Management

CHWs report being able to offer prevention services due to the training they received from the study staff. “The study invited us for a training where I learned most things that I didn’t know about and this helps us to learn and develop from one level to another” (Male CHW, age 55, Uganda). This improved their self-efficacy and confidence in providing HIV prevention services. They mentioned the different skills they acquired, including administering preventive therapy, safekeeping of the drugs, the difference between PrEP and PEP, assessing eligibility for preventive therapy, and maintaining confidentiality.

Community members call for sustaining the training of new CHWs around confidentiality as well as upholding other ethical principles when dealing with their patients.

It is a good thing, but you need to train the CHWs about confidentiality and keeping secrets. You know, community members might not be on good terms most of the time. I think it is a good option because we would find it easier and easily accessible from the CHW. (Male CHW, age 37, Kenya)

Yes, it may be a good option because they are the community members, but they should be trained as well concerning the ethical approaches and the kind of behaviours they should uphold while in the community. If they are trained, then it would be good – unlike appointing someone and then immediately they start to work without any training on how to follow the procedures. (Male client, age 58, Kenya)

CHWs suggest that if they could improve their capacity to handle additional illnesses, including malaria, STIs, hypertension, and others, they would be in a position to address the needs of their clients holistically. Clients also expressed openness to such service expansion. “The community members are complaining about hypertension; for example, my grandmother does complain a lot — she is hypertensive. She would like to receive hypertension care services at home so that she would be able to monitor her BP readings” (Female client, age 15, Kenya).

In addition to expanding the range of health services offered, some participants also requested that CHWs expand the geographic scope of their services by going to schools and other social gatherings.

Yes, in schools, for example, the youth who are still schooling like us, they can take them to colleges at the universities or even secondary schools. However much they might not get involved in intimacy while in school, but when they break during the holidays, they can be exposed. Therefore, they can take them to schools and offer such services. For example, when they visit our schools, like here in S–, secondary students are kind of grown-ups. Therefore, this can reduce the rate of HIV infection and it can really help. (Male client, age 20, Kenya)

Thus for CHWs, performance management extends beyond supervision to include expansion of both training and geographic reach.

Logistical Support

Some CHWs admitted to receiving logistical support to do their work, including airtime and smartphones. “Airtime to call people. They also give us internet data and gave us smartphones to use. I do my work and give updates with this phone. Then we are [also] given umbrellas, boots and raincoats. So all we put in is effort and time” (Male CHW, age 55, Uganda). Yet they suggest additional support in terms of transport to enable them to get to hard-to-reach places in the community:

Therefore, I would really appreciate if we can get a motorcycle in this facility. The other thing, I am afraid of the motorcycle like riding myself, so I have never had that interest of riding (laughter). I would be comfortable having someone who would be riding me but personally, I am afraid because of the way I see people get injured. (Female CHW, age 30, Kenya)

They also need personal protective equipment (PPE) during their work:

The Infection Prevention and Control (IPC) whereby you have to protect yourself first, when you are serving a client. You feel comfortable offering the service when you are protected, whereas if you were not protected, you would be afraid. If I have the PPEs, I would be more comfortable in offering the services. (Male CHW, age 28, Kenya)

CHWs expressed the importance of balancing priorities through closer coordination with providers. This includes better communication between the two—especially greater understanding on the part of providers around CHW’s other community roles. CHWs point out that such coordination will improve efficiency all around.

Secondly, some impromptu plans are not that good because one had already planned for the day is when you are receiving a call from the clinician that you are supposed to go and visit someone. You were not psychologically prepared for that, and it may interfere with your program because already you might be doing something else at that point in time. Sometimes, they may call and you are offline, but you were supposed to do something, and since you were not informed earlier, you could not know about that. Now I think that was a challenge. There should be early planning. For example, about this meeting, I was called early enough that we would meet at 11 am, but there is a change. We are now meeting at this time. You know, an early plan makes things work well and faster. (Male CHW, age 55, Kenya)

CHWs also described the need to improve their remuneration to be able to avoid distractions in their work. They need to earn enough money to survive, and if the CHW work does not do that, they need to attend to their own business enterprises.

The issue of payment is very important because when you are in a further place, you can at least get on a bodaboda, do your job in time, and return home in time — hence no disturbances because everything is done in time. Therefore, I see that the money we are given is still little and yet the work has now increased, we walk long distances because the participants are not in one place but rather scattered. But if we were getting enough money, someone would get a bodaboda, do what you are supposed to do, and you return home to do your things. (Male CHW, age 41, Uganda)

Expanding training and geographic reach invokes the additional consideration of logistical support to realize that expansion. CHWs felt that either provision of PPE, greater remuneration, or closer coordination with clinic-based providers would facilitate both their reach and their efficacy and acknowledge the effort they make as key players in connecting hard-to-reach clients with the health care system.

Table 1 summarizes the perceptions of the roles of CHWs that were expressed by both CHWs and their clients. As shown, participants held both positive and negative views of the work of CHWs, shared a common understanding of the scope of CHWs’ roles, and noted ways to support and improve CHWs’ performance. The top portion of the table draws comparisons between positive and challenging aspects of the CHW role. The bottom portion of the table compares the scope of practice with ways to optimize each cited element of their scope of practice, as expressed by the study participants.

Table 1.

Summary: Perceptions of the Roles of CHWs, Among CHWs and Their Clients

Positive aspects of CHW work	Challenging aspects of CHW work
CHWs provide accessible, private, convenient care within community	CHWs juggle competing demands between CHW role and regular work
	CHWs face geographic barriers to delivering care
CHWs are trusted by community members as a ‘known quantity’	Some clients doubt CHWs’ ability to maintain confidentiality
CHWs provide personalized care	Client fears of stigma if CHWs visit their home
CHW scope of practice	Recommendations for improving CHW performance
Perform testing and deliver materials (e.g., condoms)	Implement more performance management (e, g, training on HIV, digital health technologies, other illnesses common in community)
Assess for and provide referrals	Increase logistical support (PPE, airtime for cell phones)
Provide counseling to clients	Arrange for closer coordination of activities with clinic-based providers
Identify at-risk individuals (e.g., risk of HIV, chronic disease, loss to follow-up)

CHW, community health worker.

Discussion

Conducted in the context of an intervention aimed at improving the uptake of HIV prevention services using patient-centered approaches, this study contributes to existing evidence on the role of CHWs in health care and provides further insights to enable the optimization of HIV prevention at the community level. Despite the proven efficacy of PrEP and the willingness to use that and other biomedical prevention methods among populations at risk of HIV infection, low uptake is driven by factors such as stigma and poor access to health care services.⁵ This article demonstrates that CHWs can play a significant role in extending HIV prevention services to underserved communities, as they have previously done in improving the uptake of maternal and child health services, disease surveillance, and non-communicable disease testing within their communities.⁴⁶ CHWs hold cultural expertise that enables them to identify and effectively counsel persons at risk who shy away from facility-based services, they hold positive interpersonal relationships with clients that facilitate clients’ trust in services, and they are in close physical proximity to clients and thereby help them to overcome structural barriers to access like distance and transportation costs.

Following training, the scope of CHW work related to the provision of HIV prevention services was varied and encompassed roles such as directly providing PrEP, PEP, HIV testing, and other biomedical prevention services as well as providing education, support, and counseling on HIV prevention strategies, including education on condom use, HIV testing, and PrEP use. This illustrates the capabilities of CHWs and serves as an opportunity for task shifting in the context of HIV prevention, thus relieving the burdens faced at public health facilities that deter access to holistic care.^17,47 By streamlining CHW roles to include HIV prevention efforts, stakeholders can leverage the CHWs’ unique position within communities to expand access to HIV prevention services.⁴⁷

Our findings reinforce previous research that has noted how the close proximity of CHWs to the communities they serve is a critical factor contributing to the success of HIV prevention initiatives.⁴⁵ Unlike health care facilities that may require individuals to travel long distances, CHWs are embedded within the community, making prevention services more accessible and convenient.⁴⁵ This proximity not only reduces barriers to access but also allows CHWs to tailor their outreach efforts to suit the unique needs and preferences of the community members. This is evidenced in the findings of this study as they demonstrated their proficiency with providing client-centered care. Indeed, the effectiveness of CHWs in extending HIV prevention services in this study was attributed to the positive interpersonal relationships they cultivated with their clients. Unlike formal health care providers, who may be perceived as distant or intimidating, CHWs often share similar socioeconomic backgrounds and cultural identities with their clients.⁴⁵ This shared identity fosters trust and rapport, making clients more receptive to receiving information and support regarding HIV prevention.⁴⁵ Moreover, CHWs can be viewed as trusted confidants within the community, further enhancing their ability to engage their clients in discussions about sensitive topics on sexual health and HIV/AIDS. Their easy accessibility by phone also highlights a possible opportunity for increased telehealth delivery by CHWs in the scale-up of prevention services, an approach that has shown benefits in several locales.^40,48 By leveraging their familiarity and trust within the community, as findings in this study indicate, CHWs facilitate greater access to HIV prevention services, contributing to reducing new HIV infections.⁴⁷

Our findings highlight performance management and logistical support as key strategies that led to successful CHW performance. Performance management included initial and ongoing training of CHWs,⁴⁵ financial incentives, as well as regular and standby technical support from the provider at the health facility. Providing adequate training, supervision, and resources (including sufficient remuneration) has significant potential to optimize CHW performance, strengthen service delivery, and improve overall outcomes.^45,49 By establishing clear goals and providing ongoing support and feedback, performance management empowers CHWs to deliver quality health services tailored to the unique needs of their populations.³⁶ As health care systems continue to recognize the contribution of CHWs, investing in robust performance management practices becomes imperative to maximize their impact on public health.

The key challenges with CHW roles in HIV prevention highlighted in this study and in the context of the intervention are similar to the systemic challenges faced by CHWs that have been reported in other studies.^12,50 The challenges reported in this study among CHWs included balancing work responsibilities with other obligations, such as household chores and income-generating activities, which have implications for CHWs’ effectiveness in delivering HIV prevention services within their communities. Concerns among clients with CHWs’ ability to maintain confidentiality also emerged as a salient issue. As demonstrated in the SEARCH study, integration of HIV prevention services with preexisting CHW primary health care roles is an opportunity for the prevention of HIV-related stigma and discrimination and also serves to normalize HIV prevention services within routine CHW roles.⁵¹ The potential HIV-related stigma and discrimination described in this study’s findings would perhaps contravene the benefits of integrating CHW roles. However, besides their core responsibilities, CHWs sometimes participate in multiple overlapping NGO-backed programs, which community members recognize and can distinguish between. Ministries of Health and collaborating partners may need to look for opportunities to create synergies in the multiple CHW roles across these disparate programs in order to prevent role duplication, address stigma challenges, and support CHWs.

Health care systems can better use CHWs by formalizing their position within professional health care structures, as Malawi has begun to do.¹² This includes formalizing referral systems,²⁰ and improving training, supervision (i.e., feedback), and supply management.¹⁵ It may be helpful if training could include not only health information but also skills for income-generating activities.³⁹ Equally important are efforts to increase recognition of the important role that CHWs play in community health—helping CHWs feel like they are a vital part of the health care system.³⁷ Thus, financial considerations at the district level, identification of opportunities for task-shifting between CHWs, and integration of CHWs into a continuum-of-care model are all recommendations for improving CHW performance⁵² and optimizing the crucial link between communities and health systems provided by CHWs. This study clearly demonstrates that CHWs can play an important role in extending the reach of HIV prevention services, by helping to alleviate challenges such as professional and interpersonal distance between the providers and clients within the formal health care system, and addressing structural barriers that deter uptake of services.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

Funding Information

Research reported in this manuscript was supported by the U.S. National Institute of Allergy and Infectious Diseases (NIAID), the National Heart, Lung, and Blood Institute (NHLBI), and the National Institute of Mental Health (NIMH) and cofunded under award number U01AI150510 (Havlir). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

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