The Role of Community Health Workers in HIV Care Engagement: A Qualitative Study of Stakeholder Perspectives in Tanzania

Abstract

Suboptimal retention in HIV care is a major driver of the global epidemic, including in sub-Saharan Africa. In Tanzania, the national Community-Based HIV Services (CBHS) program integrates volunteer community health workers (CHWs) to support patient care engagement and reduce the burden placed on HIV clinic nurses; however, few studies have assessed the value of CHWs supporting HIV care. We conducted qualitative interviews with 48 administrators, nurses, CHWs, and patients to explore strengths and limitations of the CBHS program. Stakeholders believed CHWs are uniquely positioned to establish trust and provide patient support. Patients who had frequent contact with CHWs described them as valued sources of education and encouragement, but fewer than half of the patients interviewed had ever met with a CHW. Clinic nurses described feeling disconnected from CHWs, and stakeholders highlighted the need for financial, logistical, and educational support to rejuvenate the program and effectively address care engagement challenges.

Background

Sub-Saharan Africa comprises 11% of the world’s population, yet this region is home to 71% of all people living with HIV (PLWH), including 65% of all new HIV infections and 75% of HIV-related deaths worldwide (Dwyer-Lindgren et al., 2019; U.S. Department of Health & Human Services, 2019). Nurses are the primary health workers responsible for managing HIV care in sub-Saharan Africa. Given the immense burden of HIV in the region, nurses face multiple challenges in managing large patient loads, providing effective clinical care, and offering adequate patient education and adherence counseling (Mammbona & Mavhandu-Mudzusi, 2019; Oshosen et al., 2020). The unmanageable expectations placed on nurses to manage nearly all aspects of HIV care may contribute to suboptimal patient adherence to antiretroviral treatment (ART) and low retention in HIV care across multiple settings in sub-Saharan Africa (Fox & Rosen, 2015; Knettel et al., 2018).

To address health worker limitations in HIV care and resulting ART adherence challenges, there has been increased focus on developing interventions for supporting PLWH to maintain long-term engagement in HIV care (Bulsara et al., 2018; NIH, 2018; Rooks-Peck et al., 2018). In order to effectively reduce the impact of HIV in sub-Saharan Africa without placing additional undue burden on HIV nurses, innovative human resource approaches must be implemented to enhance the quality of patient care, improve patient outcomes, and prevent further transmission of HIV (Callaghan et al., 2010; UNAIDS, 2018).

In the past 20 years, task-shifting and task-sharing approaches have continued to emerge as valued strategies to address health care worker and human resource shortages for multiple health challenges throughout the world (Lehmann & Sanders, 2007). The World Health Organization (WHO) defines task-shifting as “the rational redistribution of tasks among health workforce teams, whereby specific tasks are moved, where appropriate, from highly qualified health workers to health workers with shorter training and fewer qualifications in order to make more efficient use of the available human resources for health” (WHO, 2008, p. 2). One approach to task-shifting involves the recruitment and training of non-professional members of the community, known as community health workers (CHWs), who support health care professionals by conducting patient outreach, education, and basic treatment (Bhutta et al., 2010). There is now a wide body of research to support CHW programs as impactful and cost-effective for improving health outcomes in a variety of areas, including mental health; maternal and child health; and water, sanitation, and hygiene (Bhutta et al., 2010; Knettel et al., 2017; Perry et al., 2014; Yu et al., 2019). In light of these successes, many national governments have integrated CHWs into national health systems (Shelley et al., 2018; WHO, 2008).

Tanzania currently has the sixth highest HIV incidence of any nation in the world, with 1.6 million PLWH, or about 4.6% of the adult population (UNAIDS, 2019). To respond to this challenge, Tanzania has been a leader in establishing national programs to decentralize and support HIV testing, counseling, and treatment. There are currently about 900 Care and Treatment Clinics (CTCs) providing HIV services throughout Tanzania, offering all HIV testing, counseling, and treatment free of charge. According to national CTC guidelines, educational counseling should be provided at the time of diagnosis and throughout HIV care, including support for ART adherence, prevention of HIV transmission, managing HIV disclosure, identifying a treatment supporter, and maintaining personal health, nutrition, and hygiene (United Republic of Tanzania, 2013). To advance HIV services in Tanzania, approximately 20,000 CHWs are currently supporting HIV treatment through a national program called Community-Based HIV Services (CBHS; Perry, 2020; Shelley et al., 2018).

The Tanzanian government collaborates with non-governmental organization (NGO) partners to oversee and administer the CBHS program at the regional level. According to CBHS policy, a cohort of volunteer CHWs is assigned to each CTC site. An assigned nurse oversees the CHWs and maintains a schedule so that at least one CHW is on site during all clinic hours. All persons initiating HIV care should be informed of the CBHS program, provided the option to enroll, and introduced to a CHW if they decide to opt in. The CHW maintains regular contact with the patient to provide ongoing education and support (Tanzania Ministry of Health and Social Welfare, 2015). CHWs in the CBHS program are considered volunteers and receive a monthly stipend of 45,000 Tanzanian shillings (approximately $19.50 USD) to assist with transportation and logistical costs associated with their role.

In a recent study, the CBHS program was shown to be a low-cost approach for maintaining patient contact at $39.00 USD per patient per year, allowing for cost-efficient outreach to PLWH (Forsythe et al., 2019). However, data on patient retention were not adequate to measure the cost-effectiveness of the program. Despite the national scope of the CBHS program and its long history, research on program effectiveness is extremely scarce. The goals of this formative qualitative study were to elicit the perspectives of CBHS program stakeholders on the strengths and limitations of the program and to identify the training needs of CHWs within the CBHS program, which may facilitate program effectiveness.

Methods

We conducted semi-structured qualitative interviews with 48 stakeholders in the CBHS program in the Kilimanjaro region of Tanzania, including four program administrators from the sponsoring NGO and regional government, eight HIV clinic nurses, 18 CHWs, and 18 individuals initiating HIV care. The number of participants recruited to each group were informed by team-based discussions of data saturation and, in the case of program administrators, the number of eligible participants working in the region. Interviews were conducted between October 2019 and March 2020, prior to program disruptions caused by coronavirus disease 2019 (COVID-19). Administrators were recruited from their places of work, and all other participants were enrolled from the adult CTCs at two small urban health centers serving approximately 3,000 PLWH in the Kilimanjaro region, where the prevalence of HIV is approximately 4.8%. Both study sites operate under the Tanzanian National AIDS Control Program, which provides free clinical services and ART to all patients living with HIV (Tanzania Ministry of Health and Social Welfare, 2013). Both clinics oversee active cohorts of CHWs under the CBHS program.

Participants were eligible to complete qualitative interviews if they were at least 18 years old, fluent in English or Kiswahili, medically stable (i.e., no active tuberculosis or other conditions requiring inpatient treatment), and capable of understanding and providing written informed consent and completing the interview. All PLWH who were enrolled in the study had initiated HIV care at the clinic in the past month, either because they were newly diagnosed with HIV or were transferring their care from another clinic. Eligible patients were identified by clinic nurses during appointments, introduced to the study, and those who expressed interest were referred to a private research office to meet with study staff, complete the informed consent procedures, and participate in the interview. PLWH also consented to a review of their medical record to obtain information related to their care engagement, which we completed three months after study enrollment.

Administrator interviews were completed in English by a research team member. All other interviews were completed in Kiswahili by two trained Tanzanian research assistants with 3 to 5 years of experience conducting qualitative interviews. Prior to data collection, all research team members participated in a 2-week training that included qualitative interview strategies and skills, gaining familiarity with the study protocol and qualitative interview guides, and mock interviews. Interviewers were required to successfully complete a full mock participant interaction with the principal investigator prior to contact with participants.

Potential participants were provided with a copy of the consent form, which was read aloud, and all participants provided their written informed consent prior to completing the interviews. Participants who were unable to write provided a thumbprint in the presence of a witness. Interviews lasted approximately 20 to 40 minutes and were audio recorded for verbatim transcription. Participants received 5,000 Tanzanian shillings (approximately $2.25 USD) or a similarly valued gift to compensate them for their time and transportation costs. Ethical clearance for this study was obtained from the Tanzanian National Institute for Medical Research (NIMR; Protocol #3173) and the institutional review boards of Kilimanjaro Christian Medical Centre (#2443) and Duke University (#2020–0049). This manuscript was prepared according to the Standards for Reporting Qualitative Research (SRQR; O’Brien et al., 2014).

Qualitative Interview Guide

The development of the semi-structured interview guides was informed by previous regional studies of CHW program effectiveness and needs for improvement (Forsythe et al., 2019; Kagaayi et al., 2019; Phiri et al., 2017). All of the guides contained open-ended questions to introduce the areas of inquiry (Table 1), followed by optional probes to assist the interviewer in exploring the topics in greater depth.

Table 1.

Areas of Inquiry for Qualitative Interviews With Each Participant Group (N = 48)

Participant Group	Areas of Inquiry
CBHS program administrators (n = 4)	• History of program and selection process for CHWs • Operational and logistical details of the program • Current training and oversight offered • Goals for improved training in the future
Clinic nurses (n = 8)	• Flow of HIV patient care at the clinics • HIV education and counseling provided to patients • Clinic resources and supervision allocated to CHWs • Policy and guidance passed down by CBHS leadership
CBHS community health workers (n = 18)	• Perceptions of support/training received in their role • Skills and comfort in patient interactions, adherence counseling • Perceived needs for additional support/training
Patients (n = 18)	• Motivations for seeking HIV care and plans for ongoing care • Rationale for opting in/out of CBHS program • Acceptability of types of interaction with CHW (e.g., home visits) • Suggestions for improvement of CBHS program

Note. CBHS = Community-Based HIV Services; CHW = community health worker.

Researcher Characteristics and Reflexivity

The research was conducted by a diverse team of Tanzanian and U.S.-born researchers. Administrator interviews were conducted by the U.S.-born principal investigator; all other interviews were conducted by Tanzanian study staff with previous training and experience in qualitative research. Tanzanian study team members were partners in the analysis, interpretation, and reporting of findings, including co-authorship of this manuscript.

Data Analysis

Interview audio recordings were transcribed verbatim and translated to English by a trained bilingual Tanzanian interpreter; to ensure accuracy and completeness of the translations, a random subset of 20% of transcripts was reviewed by a research team member fluent in Kiswahili and English. Data were analyzed through a team-based, thematic approach informed by applied thematic analysis and the constant comparative method (Charmaz, 2014; Guest et al., 2012). Transcripts were uploaded to NVivo 12 software and coded to develop inductive themes and inform preliminary codebooks for each of the four participant groups. After two transcripts were coded for each participant group, emerging themes were reviewed by the full study team, key constructs were defined, and edits were made until team consensus was reached. The remaining transcripts were then coded, and the codebook was continually adapted to reflect new or emerging themes. To facilitate trustworthiness and reproducibility, each transcript was first coded by one team member and then checked by another, and all disagreements were discussed until consensus was reached. A subset of 20% of the interviews were randomly selected to be re-coded by a third team member and evaluated for inter-coder agreement using a pre-established threshold of 80% agreement (Campbell et al., 2013). All re-coded transcripts exceeded the desired threshold for acceptable inter-coder agreement (range 81%−87%), and disagreements were once again discussed to consensus.

Results

Participants

The four CBHS administrators included two government officials charged with overseeing health care services in the district where the study was conducted and two representatives from the sponsoring NGO partnering with the government to manage the CBHS program. The eight nurses were employed at the study clinics and directly provided adult HIV care. The nurses were all women, were 44 years old on average (range 31–60, SD = 10), and had been in their role an average of 16 years (range 4–34 years, SD = 11). Four (50%) held a 2-year post-secondary certificate, three (37.5%) held a bachelor’s degree, and one (12.5%) held a master’s degree in Nursing. Two nurses were the designated government representatives overseeing the CBHS program at their respective clinics.

Among the 18 CHWs, the majority were women (n = 14, 78%), they were 50 years of age on average (range 24–63), and had been in the CBHS role for an average of 11 years (range 0–16 years). Seven (39%) had a primary school education, seven (39%) had a secondary school education, and four (22%) had post-secondary education. All but two (89%) held employment outside of their volunteer role as a CHW, with an average monthly income of 200,000 Tanzanian shillings (approximately $87.00 USD). Four CHWs (22%) acknowledged that they were living with HIV at the time of the interview.

Among the patients living with HIV, 12 were female (67%), and the average age was 38 years (range 20–58, SD = 11). Thirteen (72%) identified their religion as Christian/Catholic, and five (28%) were Muslim. All were initiating HIV care at the clinic, including 15 individuals (83%) who had been newly diagnosed with HIV in the past 3 months and three individuals (17%) who were transferring their care from another clinic. Six patients (33%) had a primary school education or less, 10 (56%) had a secondary school education, and two (11%) had post-secondary education. Eight (44%) were married, seven (39%) were single, two (11%) were divorced, and one (6%) was in a relationship. Two-thirds (n = 12, 67%) were employed, while six (33%) were unemployed, and those who were working reported an average monthly income of 174,000 Tanzanian shillings (approximately $75.00 USD). In the review of patient medical records three months after study enrollment, five participants (28%) had gaps in care of at least one week or more; three (17%) were no longer attending appointments and were lost to follow-up from the clinic.

Roles of Administrators and Nurses in the CBHS Program

The four administrator interviews were largely focused on the logistical operations of the CBHS program. Government administrators described coordinating with NGO partners to facilitate their ongoing support for CHWs, while NGO administrators were responsible for holding quarterly meetings attended by all of the CHWs to review metrics of the services provided and to distribute stipend payments. Metrics gathered by the NGO included the number of patients served by the program at each clinic, including the number identified as lost to follow-up from the clinic and the number re-engaged in care. The NGOs were also responsible for training new CHWs using a structured 6-week curriculum. No additional or ongoing training was provided to CHWs after this initial course.

The HIV clinics offer free HIV testing to anyone from the community, with the results provided the same day. According to the clinic nurses, their role in the CBHS program included informing patients about the program at the time of initiation of HIV treatment. Patients newly diagnosed with HIV are informed of the CBHS program during post-test counseling. CHWs typically wait for new patients to arrive in an office located in another building at the clinic. Nurses consult the CBHS roster, call the CHW currently working at the site to join the post-test counseling session, and introduce the patient to the CHW. Some nurses also report regularly monitoring patient records to identify those patients who were not introduced to a CHW at initiation of care and make an introduction at a later date. Finally, one supervising nurse at each clinic is responsible for compiling monthly reports from the CHWs and relaying these records to the municipal government (Table 2).

Table 2.

Roles of Administrators and Clinic Nurses in Program Oversight

Theme	Representative Quotation
Administrators (n = 4)
Government Oversight and Management of CBHS Program	“When they use the community health worker program it means they are using our office. For example, if they want to focus on family planning, then we need to supervise…We assign a coordinator for that program to make sure they’re following our guidelines and policies.”
Clinic-Level Oversight	“In each facility we have a CBHS supervisor who oversees them and she is receiving reports and telling me that ‘A is performing well because she attended this meeting and this is the report, but B is not performing well.’”
Training for CHWs	“The CBHS workers have gone through local training…we just teach them. It is sort of on-the-job training. Those are the people who come to volunteer on something health-related, so we teach them simple things to follow up with patients, so as they go on they keep getting on-the-job training.”
Clinic Nurses (n = 8)
Supervision and Record Keeping	“I receive instructions from the donor on what they are supposed to do. So I need to supervise them…[and] when they bring in their monthly reports from the community, I compile them and send them to the municipal council.”
Engage CHWs in Patient Tracing and Support	“I go through the files to find those who have not been connected to a CBHS worker. We know that they have no one to follow them, to know what is going on in their lives. I set these apart and make sure that the CBHS who is working that day connects with the patient.”

Note. CBHS = Community-Based HIV Services; CHW = community health worker.

Roles of CHWs

Upon being introduced to patients during post-test counseling, the CHW gives a brief description of the program and its goal to support PLWH to stay in care. They then exchange contact information, and the patient is encouraged to reach out to the CHW if they had any needs related to their HIV care. This introductory meeting typically lasts 5 to 10 minutes.

After the initial session, CHWs are primarily involved in tracking and reaching out to patients who do not show up for their monthly follow-up appointments. These monthly appointments include a visit with the clinic nurse to review symptoms, medication side effects, and treatment progress, and to receive a 30-day refill of ART. Appointment attendance is managed through a “3 Box” system, whereby the paper charts of patients with upcoming HIV appointments are placed in Box 1, the files of patients who did not attend on the scheduled date are moved to Box 2 for a reminder phone call, and those unable to be reached for 3 days after their scheduled appointment are moved to Box 3 for additional follow-up by the CHWs to attempt to re-engage them in care.

Strengths and Challenges of the CBHS Program

All of the CBHS program administrators felt the program was having a positive effect on HIV care engagement in the clinics. A government official overseeing the program described the CHW role in this way:

“They contribute a lot. As we know right now we have a critical shortage of health workers, so when they come in they have to narrow all the gaps of the work the professionals are supposed to do. Take for example with the HIV program, you find that there are many people that are lost to follow up in the community. They have to follow them and they bring them back to health care services. They are very, very important.”

Each of the administrators also emphasized the value of the health workers being members of the communities where they were working, which helped to facilitate trust with patients and remove barriers they might have in disclosing their concerns to other professionals. As one administrator described, “They [CHWs] have direct impact on the health outcomes of the community, and you find that they are easily accepted in the community. An administrator like myself, I might not be accepted. The patients might not accept what I want to tell them, but the health workers, they are easily accepted as friends.”

The majority of the nurses also described the CBHS program in a positive light. Nurses praised the CHWs for their assistance in promoting HIV care engagement, assisting in tracking those lost to care, supporting patient education, and reducing the burden placed on the nurses. For example, one nurse shared, “I really love the program…Caring for HIV infected patients is very challenging and when we are assisted by people and programs like these, then the load bestowed on us becomes lighter.” Another nurse described how a CHW who is living with HIV was able to use his experience to help educate and empower patients:

“He can share his experience with the client and we see that has a positive impact, because he can give the experience to the client. He is open and he already accepts his status, so when he gives clear examples on how to live with HIV, it is very easy for the client to understand and get encouraged.”

Despite these generally positive views, two of the eight nurses expressed serious concerns about the program in its current state. They described feeling that the number of patients lost to follow-up was too high; for example, “We have had an increase in the number of patients who just disappear and this has been due to the lack of good communication between the clients and CHWs.” Another nurse felt the CHWs were not being adequately supervised: “I really wonder who their leader is and if they are regulated at all…This program is really preventing me from doing my work properly. I don’t see their contribution at all because I do all the work myself.” Although nurses were in a position to supervise and request more effort from CHWs, this was made harder by the demands of their own position in providing patient care.

Patients also described mixed experiences with the CBHS program. Seven of the 18 patients (39%) stated they were never informed of the program and had not met a CHW after being confirmed as living with HIV. Among the 11 who had been introduced to the CBHS program, three declined to participate, largely out of concern that people would come to know or suspect that they are living with HIV if a health worker contacted them by phone or visited them at their home. Other participants had met a CHW briefly upon initiating HIV care but had not had further contact since that day:

“We met not even for five minutes. We didn’t discuss for a long time. I just asked him to write his phone numbers for me. He wrote his phone numbers and I told him that if I see anything different, I will either call him or text him for more discussion…That’s it. Since then until now, we haven’t had any further contact.”

Despite this lack of close contact with a majority of patients, seven of the patients had met with a CHW regularly since initiating their HIV care. These patients described very positive experiences, including receiving valuable education about HIV from the CHWs, as well as emotional support. As one patient shared:

“He counseled me that I should not lose hope, that I should live full of hope and I should take my medications every single day. I shouldn’t stop taking my medications. Though there are many people who are in a condition such as this, when they adhere to medication, they can live a longer life and you might not even know that they are infected with HIV.”

Among patients who had frequent contact with CHWs, several came to develop close relationships with the CHW over time. “As I continued talking to her, I started to see it like I was with my sister. We discussed my personal issues and she became like my family” (Table 3).

Table 3.

Perceived Strengths and Challenges of the CBHS Program

Theme	Representative Quotation
CBHS Community Health Workers (n = 18)
Earning Patient Trust	“Most of the patients who receive services from CBHS receive it very well because they realize the benefits that they got. Sometimes a client might call you asking you to fetch her medicine from the clinic because she wasn’t able to attend. This makes them respect your services. Another example is where a client’s spouse had refused to test and you encouraged them to agree to come to test. This makes them know that the CBHS services are very beneficial to them.”
Importance of Relationship Building and Empathy	“We gain trust by building a relationship and, as the service provider, wearing the shoes of the client in the different issues. In other words, you make their problems your own.”
Patient Concerns About Privacy and Stigma	“They ask you where you will be meeting because they wouldn’t like you to go to their house. People know that you give services to home-based patients and now they see you visiting the client. We could call that stigma. They do not want to be seen as people who are using ART.”
Patients in the CBHS Program (n = 18)
Program Helpful for Maintaining Care Engagement	“Whenever I have challenges, I can call her and talk with her. I might come to see her or she will meet me somewhere. Then she will be able to tell me that in my circumstances or condition that I am in, what is going to happen.”
Need Clear Communication About Program and Goals	“We should be given more education about the program and more information about what it’s all about.”
Time Constraints and Other Obligations	“If you’re at work and the CHW is calling you and asking if you are coming to the clinic today, that’s another challenge.”

Note. ART = antiretroviral therapy; CBHS = Community-Based HIV Services; CHW = community health worker

CHWs expressed a number of challenges throughout their time in the CBHS program as well as several rewarding aspects of their position. One of the greatest obstacles they reported was low patient cooperation, noting it became difficult for them to complete their work when patients were not receptive to follow-up. Low cooperation was often due to lack of acceptance of their diagnosis and concerns about HIV stigma, including lack of disclosure to loved ones. Often times they found that patients had little to no hope after hearing their initial diagnosis,

“I mean to some of our friends who are infected there are those who have already despaired and they don’t want to continue with life and they don’t want to push themselves to work for an income because they think, ‘since I am dying at any time, there is no point.’”

A patient’s struggle to accept their diagnosis caused tension with CHWs attempting to educate them on topics such as nutrition and the importance of medication adherence. This frequently led to refusal of services:

“You may call them on the phone and they answer you in a way that discourages you. You call a patient that you have treated very well but they answer saying, ‘Please, stop bothering me! I am the one who is sick and I have said that I don’t want to come there [to the clinic].’ You become very discouraged because you know the outcome of this action.”

When patients did not disclose their HIV status to their loved ones, this was also a barrier to services as patients feared that associating with CHWs would make it evident that they were living with HIV. “Some people don’t like to disclose [their HIV status] to their family members, so they will not be open with you.” If patients decided not to disclose their HIV status, this ultimately led to gaps in care or redundant care as they traveled to clinics in neighboring towns:

“Sometimes you find that a patient is being treated here, but if they discover that someone has found out about them here, they move to another place where they pretend that they are being newly diagnosed. So they use a new name, take a new file, and start all over again.”

CHWs frequently mentioned lack of funding as a major challenge with the program. Because patients are often struggling financially, they expected that CHWs would provide them with basic necessities like food or over-the-counter medications during their follow-up visits. In some instances, CHWs felt pressures to use their own money to help patients who were struggling.

CHWs consistently expressed the desire to have their efforts recognized. They mentioned that doctors and nurses are acknowledged for their work with patients, but acts of service by CHWs are forgotten.

“Community health workers have no value in this country. Nobody cares about our work and no one is interested in what we do. Only doctors and nurses are seen and are appreciated for their work.”

Although there are significant challenges that CHWs face, they expressed numerous reasons for doing this work. Almost all of the CHWs mentioned that they find this work to be rewarding.

“I do this because it touches my heart and so it is easy to help each other because we are speaking the same language. So you look around and see what is within your capacity to assist, since as you know we are all passing here on earth.”

Finally, CHWs expressed a desire to volunteer their time as a result of knowing someone personally affected by HIV. Some took the job to learn to care for children with HIV after their young family members were diagnosed. Others have had partners who either actively have HIV or have died from the disease, which has motivated them to help others.

Ideas for Program Improvement

Participants in all groups provided suggestions for program improvement, with four prominent overarching themes: increasing training opportunities, providing new support for the CBHS program, improved coordination among stakeholder groups, and extending community outreach and advocacy. Almost all of the CHWs indicated they believed they would benefit from additional training, including refresher training to assist them in better supporting HIV treatment. One worker stated no training was provided after initial onboarding: “I would hope to get more training than what I have already received, because I remember the last time was in 2010, and until now I have not received any other training in order to improve the services I provide.”

Several CHWs suggested specific topics of focus for future training, including topics related to first aid and skills to provide basic medical care, counseling skills, mental health, and strategies for motivating healthy behaviors such as strong medication adherence and good nutrition. For example, one worker stated,

“I wish to know how to provide first aid to the patients, so if someone has an infection, or they are vomiting, or they have diarrhea, I can help them before we go to the hospital and make them walk on their own.”

The majority of administrators and nurses also indicated CBHS workers would benefit from additional training to improve their services. Some felt that this training might be particularly helpful for existing CHWs, as they now had work experience that would inform their learning. For example, one administrator stated,

“They need some refresher training because they were taught a long time ago…Once they come to the real activity, it is quite different from what they were taught in the class, so they have to be reoriented.”

Administrators suggested training topics similar to the CHWs, including first aid, strategies for managing chronic illness, nutrition, contraception, and stigma reduction. Clinic nurses provided additional suggestions for training including communication skills, talking to patients about HIV status disclosure, and managing suicidal ideation. About half of the nurses believed increased supervision of the CHWs could facilitate their training, as this would assist them in translating their education into practice.

The majority of CHWs, nurses, and administrators also noted that the program would benefit from increased financial and logistical support, as the current stipend provided to CHWs does not cover the costs they incur. Several participants suggested that support should include cell phone minutes, a dedicated work space at each clinic, increased stipend funding for CBHS workers, tablets to document services provided, and assistance with transportation. The administrators noted that they might be able to retain the workers if they were paid for their work, with one participant stating, “The fact is that they don’t have government employment. If we can have a system whereby we have at least an organized way of supporting and retaining them, they won’t have to go for greener pastures.”

Participants indicated that a lack of resources prevented CHWs from making regular contact with patients and also hindered the impact of existing contacts. CHWs suggested investment in equipment such as bicycles to facilitate home visits, as well as personal protective equipment (e.g., gloves) and first aid kits so CHWs could attend to the basic medical needs of patients, such as dressing wounds. One CHW noted,

“If you had transport, if someone said there was a patient who needed your attention, you could just jump into your transport and go to see the patient. After you have asked them their problem, you might even decide to take them in the transport to return to the clinic. This would reduce the number of the lost cases.”

About one-third of CBHS workers indicated they would like to be able to provide food, medical supplies, and contraceptives to patients. CBHS workers noted it was difficult to do their job when their patients’ basic needs were not met, with one participant stating, “If a patient has no food and they are experiencing medication side effects on an empty stomach, how can you tell them off when they do not take the medicine?”

Administrators, CHWs, and nurses all noted a need for additional oversight and coordination among stakeholder groups. Most administrators reported oversight of the program was inconsistent, with one participant stating, “rarely there are site visits at the clinic.” CHWs reported a lack of supervision while working. For example, one CHW stated, “we used to have a supervisor but she has left…we do not have direction.” Several nurses indicated they believed more supervision and coordination among stakeholder groups would help the nurses and CHWs collaborate more effectively, with one nurse stating, “I think we need to have better follow up and supervision with the CBHS workers, to connect them better with the nurses.”

Additionally, the nurse and patient groups noted the importance of community engagement to reach populations not currently served by the program, promote HIV testing, and advocate for PLWH; these participants indicated the CHWs could take a larger role in community engagement. For example, one nurse described how CHWs can encourage HIV testing: “There are patients who have already made friendship with CBHS workers and they can persuade someone else to go for HIV testing.” Another nurse described how CHWs can increase public education. “The job of the CBHS worker in the community is to help us educate the public. They should be supported and educated, not only for serving patients, but also for those who are not infected. They should educate them in the streets, in the community.”

Discussion

This study examined the contributions and perspectives of various stakeholders in the CBHS program, a nationwide task-shifting/sharing program aimed at promoting HIV care engagement in Tanzania. The CBHS program is impressive in its scale and structure, with government oversight, NGO support and management, on-site supervision from HIV clinic nurses, and a well-established network of CHW volunteers. Stakeholders at all levels spoke of the promise of the program and its perceived benefits to patients, noting that, as members of the community, CHWs are in a unique position to establish trust and provide support to patients. Patients who had frequent contact with CHWs described them as valued sources of education and encouragement. These positive perceptions of the CBHS program support previous literature, positioning CHWs as valuable contributors to reducing human resource shortages in HIV care in sub-Saharan Africa (DiCarlo et al., 2018; Mwai et al., 2013).

In addition to its perceived beneficial impact, our study highlighted several shortcomings and challenges in the CBHS program. Among patients in the study, fewer than half had ever met with a CHW, as some were never introduced to the program and some declined due to concerns about confidentiality. Clinic nurses indicated that they sometimes felt disconnected from the CHWs, which prevented them from connecting patients with CBHS services. Stakeholders from all groups identified the need for additional financial, logistical, and educational support to rejuvenate the program. This includes a clear need for ongoing refresher training for CHWs to extend their skills and ensure their knowledge reflects the current landscape of HIV care (Busza et al., 2018). Our findings reflect several common criticisms of CHW programs worldwide, such as their reliance on external funding and support, which may create barriers to long-term oversight, sustainability, and impact (Kemp et al., 2019; Knettel et al., 2017).

From the patient perspective, concern about HIV stigma and the potential for breaches of confidentiality by the CHW created barriers to the overall acceptability of the program. Patients feared that being seen with a CHW or having a CHW visit them at home might raise unwanted questions about their HIV status, which led some patients to decline to participate in the program. To address these concerns, CHW programs must offer patient education and support aimed at reducing HIV stigma and exploring healthy HIV disclosure. Program administrators should also consider service delivery solutions that respect patients’ privacy preferences (Mundeva et al., 2018). This may include reserving private spaces at the clinic to meet with patients and always checking with patients at the clinic or by phone to ask if they are welcome before attempting a home visit.

Despite its shortcomings, the structure of the CBHS program remains solid, and the CHWs are motivated and eager for additional support. These findings point to several promising avenues for future program improvement, including regular refresher training that incorporates new topics and skills, including counseling skills, stigma reduction strategies, support for HIV disclosure, and screening for comorbid mental health challenges (Neve et al., 2017; Watt et al., 2020). To address privacy concerns, CHWs may seek to facilitate opportunities for peer support among patients, which has been shown to both reduce the stigma associated with seeking care and improve patient outcomes (Grimsrud et al., 2020).

The study findings should be interpreted in light of the following limitations. Patients in the study were recruited after initiating HIV care at the clinic; therefore, we did not capture the perspectives of PLWH who were not engaged in care. Future studies may seek to engage these stakeholders, who are likely to share important perspectives on barriers to HIV care and CHW program success. It will also be important to conduct future longitudinal studies to understand longer-term benefits and challenges in the CBHS program, including follow-up interviews with patients who have discontinued participation in the program. Study personnel were not affiliated with the clinics or the CBHS program, but social desirability bias may have influenced participant responses. Future studies may seek to quantify the extent to which patients interacted with CHWs during their care and may also include a review of patient medical records to corroborate self-reported challenges with care engagement and medication adherence.

Conclusion

Although Tanzania’s CBHS program is perceived as a strong resource for patient education and adherence support, this qualitative study identified several opportunities for program improvement. They include opportunities for increased reach by ensuring all patients are linked to CHWs; increased impact by advancing community health worker training and oversight; and increased acceptability by addressing patient concerns related to privacy and stigma.

Key Considerations.

• Sub-Saharan Africa continues to face an immense burden of new HIV infections and HIV-related deaths that is driven in part by challenges in maintaining long-term retention in HIV care among people living with HIV (PLWH).

• Nurses are the primary health workers responsible for managing HIV care in sub-Saharan Africa, but nurses face multiple challenges in providing effective clinical care, education, and adherence counseling due to extremely large patient loads.

• In Tanzania, a national community health worker program known as Community- Based HIV Services (CBHS) has been implemented to task-shift/share the burden of HIV care from nurses to lesser-trained members of the local community.

• In our qualitative interviews with 48 CBHS program stakeholders—including administrators, HIV nurses, community health workers (CHWs), and PLWH—fewer than half of PLWH had ever met with a CHW.

• We identified key strengths of the CBHS program in providing support and building a sense of trust and connection with PLWH, as well as challenges in establishing consistent contact, maintaining confidentiality, and clear communication among stakeholder groups.

• The CBHS program has immense potential to address HIV care engagement challenges in Tanzania, but must seek to increase its reach by ensuring all patients are linked to CHWs; increase impact by advancing community health worker training and oversight; and increase acceptability by addressing patient concerns related to privacy and stigma.