Setting

Lighthouse Trust (LT) supports the ART program of the Malawi Ministry of Health (MoH) and provides integrated HIV prevention, treatment, care, and support services in five high-volume Center of Excellence clinics across the country. LT is widely recognized for its innovations and efforts to improve the quality of care over two decades of HIV-related service delivery [15–22]. In urban Lilongwe, LT runs two, large flagship clinics with 25,148 RoC at Martin Preuss Center (MPC) at Bwaila Hospital and 12,853 RoC at the Lighthouse Clinic (LH) at Kamuzu Central Hospital. At these two flagship clinics, viral load suppression at 12 months on ART is higher than 90% according to routine monitoring and evaluation data. LT also supports care at nine peri-urban satellite sites in Lilongwe district. LT implements the same training, policy, and practices at all sites, including use of the Malawi MoH’s real-time, point-of-care electronic medical record system (EMRS). LT implements several care models. Clinic-based models include expanded early and late service hours, adolescent-friendly programs, integrated family planning services, and non-communicable disease care. LT’s community-based DSD model is the Nurse-led Community-based ART Program (NCAP). In NCAP, community-based nurses provide ART services to eligible RoC referred from all LT clinical settings in Lilongwe. RoC from LT clinics may be referred to NCAP if they meet the following criteria: 1) at least 18 years of age; 2) clinically stable; 3) on ART for at least 6 months; and 4) member of a peer support group. All NCAP clients previously received services at LT clinics. NCAP operates in the community during routinely scheduled peer support meetings held in churches, community centers, schools, or other gathering places according to the peer group preference. RoC meet with a community nurse who visits that location with an established peer support group every 3–6 months. In 2023, over 5,195 RoC in 120 peer groups in Lilongwe were enrolled in NCAP and reported viral load suppression among NCAP RoC on treatment was ~ 95%. NCAP receives high levels of client satisfaction and has healthcare worker support for expansion [7].

Study design and population

As part of a larger qualitative study on data privacy and security in both community and clinic settings [23], we conducted eight focus group discussions (FGDs) with RoC enrolled in clinic-based care models and the community-based NCAP model from September 7, 2022 to October 14, 2022. FDGs were not conducted in the satellite sites. The FGD facilitator was a trained Malawian LT qualitative researcher who speaks both Chichewa (the most common language in Malawi) and English. We used purposeful sampling at two flagship clinics and four NCAP care locations to enroll 63 RoC in 8 FGDs of 6–10 people each—four FGDs with RoC who received clinic-based care (2 at LH and 2 at MPC) and four FGDs with RoC who received care through NCAP. We determined that eight FGDs was sufficient to reach theoretical saturation of key themes [24]. LT staff providing care for both models screened RoC for study eligibility: 1) age 18 and above; 2) at least a primary education; 3) written voluntary consent to FGD participation; and 4) permission to audio record the discussion. FGDs were conducted at the location of participants’ routine care model, either the clinic or NCAP site.

Data collection

Four FGDs took place at two flagship clinics and four NCAP sites. All FGD participants signed confidentiality agreements to not share information discussed outside the group and gave permission to have sessions audio recorded. Each FGD included seven to nine participants. FGDs were conducted using a semi-structured discussion guide. The guide explored RoC’s opinions, preferences, and perceptions about using clinic-based and community-based care models. In this study, we focus on reasons for accessing ART services at their chosen care model, including HIV-related stigma, and consideration for alternative care locations. A Malawian qualitative researcher facilitated all FGDs in Chichewa. FGDs were audio recorded and lasted about an hour. After each FGD, the facilitator translated and transcribed the FGD into English and completed a debrief report summarizing key points, participants’ openness, and group dynamics. The research team reviewed and discussed all debrief reports.

Analysis

FGD transcripts were analyzed using thematic analysis, combining deductive and inductive steps [25]. Two team members (located in the United States and who did not conduct the FGDs) conducted a detailed reading of the full-length transcripts and developed an initial codebook restricted to the questions about care model preferences, including concepts related to stigma, in ATLAS.ti v.8. A second team member reviewed the code application and resolved disagreements through discussion with the main analyst. The analyst team shared initial results and coding with the LT study team members for their inputs before finalizing the code list.

Ethical considerations

This study was approved by the University of Washington Institutional Review Board (STUDY00013936) and the National Health Sciences Research Committee of Malawi (# 2968). All participants provided written informed consent. All participants were compensated with K10310.00 (approximately 10 USD) for their time. This study was conducted in accordance with the LT team and researchers whose primary interest is to improve the quality of care of RoC.

Researcher positionality

The author group consists of international researchers from a US academic institution and local researchers embedded in the HIV program setting at LT. The group benefited from in-depth local knowledge and experience of HIV studies across various geographic settings. All authors used an iterative process of data review and reflection [26], including group discussions of preliminary results and discussion on how individual perspectives may influence data interpretation. This process is designed to strengthen the study’s methodological rigor, transparency, and inclusion throughout the research process, especially during data collection, analysis, and results reporting.

Recipients of care want convenience

The convenience of integrating appointment visits into daily routines influenced participants’ choice of care model. This sentiment was expressed more strongly among participants from NCAP than the clinics. Short travel distance was a major factor that influenced participants’ choices.

“I am thankful for this arrangement where we must be getting medication in the community. Sometimes we leave some activities in the community, we come here and get medication and attend to activities like funerals within the community. In addition, when we are sick, we can get medication here when the providers visit the community...Bringing the community ART program has helped us a lot. We can leave beans boiling on fire, come here and get back home, and still find the beans boiling. We are very grateful.” – P5-NCAP2

For some clinic-based participants, short distance to the urban clinic and extended hours of operation enabled them to integrate clinic visits into their work schedule.

“I like this clinic because it is near to my home, as such I do not struggle with transport. In addition to that, they open the clinic early in the morning. I can go back to work once I collect my medication.” – P1-Clinic2

However, not all clinic-based RoC can visit the clinics so easily. Many NCAP participants said that the distance, travel time, wait time, and costs associated with accessing clinic-based services was a factor in opting for NCAP, noting a reduction in their travel time as a result.

“We have different ways of getting transport money, some of us struggle to find money. By bringing the medication right in the community, they reduced the distance. We consider it to be a great thing because it helps to reduce the distance.” – P3-NCAP2

In addition, participants reported that they no longer needed transport, and therefore transport fees, by choosing the NCAP model. The NCAP location made it easier to attend support group meetings and receive consistent ART.

“We like getting our medication at this place because we save transport money. In the past, one would fail to report to the facility because they do not have money for transport, and that made them not to be adherent to medication. Bringing the community program made us not to miss appointment dates and to be taking medication properly.”– P8-NCAP3

Recipients of care value high quality of care

In FGDs from both clinics and NCAP, RoC expressed that providers respected and cared for them kindly, which affirmed their choice of care model. At the clinics, participants noted that nurses offered adherence counseling and emotional support to encourage them to live healthy lives and accept their serostatus.

“Since I started taking medication. I am encouraged especially because of the counseling that is provided at Lighthouse so that one accepts their status. They provide counseling on being adherent and other issues that make one encouraged and be healthy [as it was before].” – P1-Clinic3

Clinic-based participants also compared the quality of care at LT clinics to that of other hospitals or clinics, making informed choices on which clinic to attend: “There are some sites where one would be disappointed because they have been shouted at. Even though I live far from here, I make sure that I report to the [Lighthouse] clinic” (P3-Clinic2). Distance and cost of care was therefore not a major consideration for some RoC when choosing care model.

“Even though I live far from here, I heard that they manage the disease very well at this clinic. When I was referred here, I noted that there is expertise at this clinic. As I continued collecting medication here, I noticed that they have good reception. During my first visit, I noted that there is respect and love for the client, this is different from what I experienced in other sites. It made me happy, and I decided that even though I live far from the clinic I will be reporting to this clinic.” – P6-Clinic2

NCAP participants reported that community nurses were more respectful and friendly as compared to clinic providers. This observation reflected a common perception that NCAP providers were interested in the lives of RoC, which encouraged RoC to openly share health issues with nurses. One participant characterized NCAP providers by noting that, “they warmly welcome us; they are happy and interested in us. In addition to that they are attentive when we are sharing our issues with them, they provide the right kind of support” (P6-NCAP4).

Providers offering responsive and appropriate care that was easy to understand was seen as another incentive for staying in NCAP. Specifically, participants appreciated how NCAP providers offered referrals and reminders for other preventative healthcare.

“Our providers provide services appropriately, whenever we have issues in addition to the medication that we get, they act so fast to refer one to the clinic where they can get assistance. Whenever they have something to share with us, they make sure that they deliver the information in a proper manner so that we can understand. We are so happy with the doctors who come here.” – P4-NCAP2

Recipients of care want their privacy protected

Privacy was an important consideration for all participants in choosing their care model. Clinic-based participants chose longer travel times and distance to receive care at LT to avoid encountering people from their communities. The primary reason was fear of unwanted disclosure of HIV status and discrimination.

“I also come from far, but I still come here because I believe my privacy can be maintained because it is far from my home. I did not meet people from my community when I came here. There are others who discriminate against others once they learn their HIV status. When I came here my confidentiality is maintained.” – P4-Clinic2

Many participants reported that they felt reassured that they would not be seen by people they knew because both LT ART flagship clinics are in a separate section of the hospital.

“I am happy, nowadays. Those of us who are positive and on treatment are stigmatized, we are seen differently. I am happy because they separated the clinic, it isolates us from them, and they do not know where we go and what we do there. It makes me happy to come to this clinic.” – P5-Clinic1

Within the LT clinic, participants felt that privacy and confidentiality were well-maintained, noting that providers ensured that conversations were held in a private room.

“When we get into the nurse’s room, they tell us to close the door. It is only the client and the nurse in the room. So, whatever we discuss is confidential, it remains between the nurse and the client. They maintain our confidentiality.” – P2-Clinic3

Several NCAP participants also reported they had more privacy through service delivery at NCAP model sites. The LT clinics are located near general health services on the main hospital campus, where there was greater potential to encounter someone from the community they knew, including guardians of other RoC, who might disclose their status to others.

“Sometimes it happens that one has sent a guardian, and you meet them [referring to the guardian]. It then becomes embarrassing when you meet at home. If the person that you met is not able to keep it to themselves then they will tell other people that you met at the clinic and that you are taking medication. That made others not to report to the clinic with fear that they will meet other people who know them.” – P8-NCAP3

RoC who chose NCAP also explained that physical separation of spaces at NCAP sites enhanced the sense of privacy.

“When the nurses get here, there is a distance between them and the recipients of care, even if one looks at them there is nothing that they can hear. There was another place where we had a side room, where one would not hear what is being discussed no matter how hard they try to pay attention. There is a distance between other recipients of care and the nurse.” – P3-NCAP4

However, some RoC chose to remain in clinic-based care because of the risk of unwanted disclosure through NCAP participation.

“In the past there were groups and once you join you were connected to a smaller group where you were visited. But there were the same people [from the group] who were disclosing other people’s status, yet this is confidential. A lot of people thought that those groups were not good, and a lot of people decided to drop out.” – P7-Clinic4

Choice of care model is reinforced by sense of mutual support

NCAP participants appreciated the peer support they gain through their care model - a sentiment that was expressed exclusively by NCAP participants. Most NCAP participants reported that the community group model enabled them and their peers to stay better engaged in care compared to at the clinics. Participants shared how they supported each other to attend community visits, including volunteering to call or visit other RoC to remind them to meet.

“We are very comfortable. We also encourage each other as clients who report to the community to get medication. We encourage each other that if we have noticed one of our friends is sick and is not aware of the main issue, we visit them. Though we are not volunteers, we tell them the facility where they can get help. It is good to be open.” – P4-NCAP2

The mutual support between NCAP RoC also enabled them to encourage one another to seek care for other health issues.

“We are happy to be getting medication in the community. It is a good thing because we encourage each other about health and some of the issues that we face. Unlike at the clinic like [X] or [Y] where there are different people, and it is hard to be free to interact. Here [in the community] we meet too often, and it makes it easy to encourage each other.” – P6-NCAP2

NCAP participants also felt that they supported the nurses’ role in care delivery. NCAP RoC and group leaders worked closely with community nurses to track other RoC who missed their scheduled appointments, which likely helps to reduce the number of defaulters.

“We work with the providers, and this has reduced the number of defaulters…We are able to know the appointment dates of the clients and we are able to remind them, when they do not show up to the community distribution point. We follow them up and bring them here. It is unlikely to have defaulters and we have reduced the workload for the providers.” – P7-NCAP2

The collaboration between the group leader and the nurses also allowed volunteers to deliver medication to RoC who, for various reasons could not collect them from the nurse, thus encouraging continuation of care: “I am thankful because when we forget to get the medication, they visit us at home and give us medication” P4-NCAP3.