Keep up visit reminders.

Across FGD SoC and 2wT groups, all participants acknowledged having accessed and appreciated retention support services provided by LT and the larger health system, noting that “the facility has set in place good procedures of reminding us of an appointment… So, we need to appreciate them for all these good interventions in reminding us for an appointment date.” (FGD 10). Reminders were considered important for all clients, serving as a prompt to arrange transport or work schedules. Reminders should be the same for all.

“I think a patient is a patient, whether identified today, last year, or whatever year, they are all the same. The way one who started a long time ago can forget is the same as someone who is new, we are the same, I feel it should be the same and good.” (FGD 9, Female)

Although there was near universal support for appointment reminders using both SMS and phone, the order of the reminder support differed among the participants. Participants who received 2wT tended to include SMS first in the progression of escalated retention support, suggesting that “for those who did not come after a text message, then a phone call will do” (FGD 2, Female). Others felt either an SMS message or phone call could serve as the first retention support option, believing that “the best way is to use the phones through calling or texting depending on the issues at hand.” (FGD 2, Female)

Escalate retention interventions for clients with specific needs.

Participants in both the 2wT and SoC groups saw the need to intensify retention intervention methods when clients missed multiple visits, moving from SMS or phone followed by a home visit if previous attempts were unsuccessful in returning the client to care.

“And if you call him and is still not coming, we people left our physical addresses of where we stay. So, you are supposed to search for the person and find them, hear their problems and their reasons why they are not coming.” (FGD 7, Male).

The escalation of retention support was considered crucial to engage those who have extenuating circumstances, like sickness or frequent travel that could complicate attending visits. Also, as all clients knew that they provided addresses, it was expected that home visits would be conducted for those who failed to return to the facility after missing a clinic visit for a long period.

Vary retention support delivery based on client characteristics.

Across 2wT and SoC groups, including across time on ART, feedback on what retention support was most needed or desired varied. For example, some participants noted that those newly initiated on ART might need more intensive support while they are in the process of accepting their HIV status, suggesting that new initiates might benefit from a home visit or more frequent contact.

“For a new initiate, it takes time to get to the point where one has fully accepted their status and what they are supposed to be doing… So, a new initiate needs to be contacted frequently until she gets in line… if it’s phone it’s okay. You also feel good that other people remember you. To say the truth, you feel valued, and you know that your life is important.” (FGD 7, Female)

On the other hand, participants also noted that more established clients on ART might experience medication fatigue, suggesting the need to reinvigorate clients who have been on ART a long time.

“You might say this one has been taking medication for long and knows everything. But they might take it for granted and say, ‘I am tired of the medication, I want to stop, I am very tired.’ … You must visit this person or call this person so that if they had ideas to stop the medication, they get encouraged and cannot stop taking medication.” (FGD 8, Female)

Participants also identified client age as a reason to differentiate support. Many thought that younger patients need more intensive support because they are more likely to forget their medication and are less “serious,” suggesting the need for group or peer support. Respondents noted that a key challenge for younger, newly diagnosed HIV-positive clients is having to start medication when you are not sick.

“To say the truth is that it is not an easy thing for one to accept when they are told that, ‘you are HIV positive’…Very few of them are strong and will respond to say “aah it’s okay, I will accept it and start taking medication.” Most young people need this kind of conference, and someone should counsel them so that they should understand that, ‘you will not die today when you start taking the drugs, this will make you to look good.” (FGD 6, Male)

Others said that older patients, including those with more advanced HIV or home-bound clients, have more issues with memory, requiring more involvement of guardians or more home visits.

“So, I would recommend they should have a special reminder to the aged 60 years above as they have depleted their memory and are slow in acting. You may wish to remind these aged through their guardian… You may phone call them through the guardians.” (FGD 10, Male)

As these older or sicker patients could be unable to travel to the facility for ART refill visits, this additional attention would be warranted to help them retain in care.

Stigma and fear HIV status disclosure still affect retention support preferences and choices.

Participants in both the 2wT and SoC groups expressed concerns that others can read SMS messages containing HIV information on a shared phone, unlike a phone call in which a healthcare worker can verbally verify the call recipient before discussing any information including HIV-related.

“I feel like the information that is sent is enough, there is no need to add HIV related information. This is our secret. Even if we leave our phone and someone checks them, they will not be able to know what the messages are all about. If those messages have HIV related information, then it will make someone know your status.” (FGD 1, Female)

Participants cited fear of accidental disclosure as a reason why some might decline 2wT, and why 2wT motivational messages should not include HIV-related information.

Encourage individual responsibility.

Several participants noted that for retention support to be effective, clients, themselves, should take personal responsibility for their health and ultimately their retention on ART as part of accepting one’s HIV-positive status.

“Firstly, you can never forget the appointment date when one has accepted that you have a problem. I have never missed an appointment date since I started. I accepted that I have a problem. For me to be healthy, I must be responsible… For my life to be better I must be serious and report to the clinic.” (FGD 5, Male)

From this responsibility and acceptance, participants also discussed that clients who are engaged in HIV self-management could relieve the burden on healthcare workers who are responsible for their support: “I should make myself available [for my visits] because they are helping my life, not their life. So, we are supposed to encourage ourselves.” (FGD 7, Female). Others suggested that multiple reminders should not be necessary: “It is not good that the same person should be reminded here and again, as an individual we just need to be responsible enough for our care.” (FGD 10, Male)

Motivate clients with non-HIV related health information.

Current 2wT participants appreciated the motivational messages because they provide education on general health topics not related to HIV including hygiene and family planning, encouraging positive health decisions. “They encourage us about our health. Sometimes they write messages that we have to remember to wash our hands. It is one way of encouraging us and I like that.” (FGD 1, Female). Participants also liked the messages about general health, wellness, and prevention of other illnesses.

“It [2wT] helps to guide in our daily life operations, for example, cholera issues and house hygiene. Sometimes you may realize that your surrounding area is not tidied up, so we refer to the message while we are cleaning the surrounding area.” (FGD 2, Male)

Recommendations from current 2wT clients to improve motivational messages included including more seasonal messages (ex. to inform/educate during a cholera outbreak), and including religious messages to balance physical, emotional, and spiritual wellbeing.

“Health goes together with spiritual and when you send the messages, you should include the verses, you should send the verses (in the messages) and we will interpret it ourselves.” (FGD 4, Male)

Participants felt the religious messages could pertain to any religion (e.g., Christian and Muslim) and the person receiving the message would know for whom the message is intended.

Healthcare workers should interact more with clients to increase engagement.

In addition to appreciation for being reached with reminders and motivational messages, 2wT participants felt that interaction with the healthcare workers via SMS made them feel cared for.

“When you tell them that you will not report to the clinic, they ask why, and when you tell them, they ask if they should change the date. That makes one feel cared for.” (FGD 1, Female)

Others felt that retention support, especially home visits, could benefit from more clinician participation to provide auxiliary health services like HIV testing for family members and care for those too sick to attend.

“It should be the same nurse and doctors because if you get others like technicians then it will not help because the person/client may be suffering from some diseases. The doctors know what one is suffering from when they see them. It needs someone who was well trained, someone who graduated.” (FGD 5, Male)

However, other participants raised concerns about clinicians visiting clients at home due to stigma and accidental disclosure of HIV status as clinicians could, “arrive at a home, you stop the car, and you are wearing your white attire, and they know you are from clinic.” (FGD 7-SoC new on ART-99). Participants suggested that clinicians should not conduct home visits in uniform and that healthcare workers could be met at a more anonymous community venue for anonymous support.

Healthcare workers should adopt a more empathic and kind attitude.

Participants highlighted that retention is more than the medication, being significantly influenced by the quality of care and a respectful environment. Most believed LT staff was courteous and kind. From FGD 6, one respondent stated that they, “would like to appreciate what the clinic does, when one reports to the clinic for to start treatment you welcome them warmly, in loving, caring and happy manner.” Another reinforced the caring healthcare workers, “The way you welcome us in this facility it’s unique and this hospital is different with other hospital...I realized the workers here are good and they know what they are doing. This is really a calling for you” (FGD 3). But not all FGD participants had such pleasant interactions. However, participants noted that not all providers had adopted an attitude that encouraged client retention support, showing a lack of empathy and respect for those facing retention challenges.

“Some may shout at you and that can make one be scared or backslide as they are afraid of being shouted at, maybe they forgot and have more drugs remaining. So, they may be talked at in a bad way… That can make people who are new on ART to be scared… Sometimes when we see a provider in a room, we shun that room and go in another room and sometimes we make delays deliberate.” (FGD 8, Female)

In FGD 5, an exchange between participants was revealing. One of the participants spoke of the reception, noting that “They [reception staff] speak in an insulting way as if we are here for no good reason. “Don’t you know where you should stand? Go that side. Don’t disturb me. Go that side” (mimicking the provider) (FGD5). But, in response, others chimed in to suggest a contrast with the respect and care from retention teams “who make calls are excellent”, and “we feel good on the phone.”

Expand peer-to-peer support.

Participants were of the view that it matters who provides retention support services. Retention support provided by other HIV-positive clients, like an ART Buddy, is most helpful, particularly because learning from the lived experiences of people who have been on ART is encouraging and can allay common fears and help those newly diagnosed HIV-positive accept their status. One participant talked about how their ART Buddy support was crucial to overcome ART side effects.

“It reached a point where I was scared to take the medication in the evening, but the person encouraged me and said ‘The drugs have not gotten used to your body and it will all stop. Don’t worry about anything that you experience when you take the drugs. It will all stop once the body gets used [to the medication]’... Without that person then one would think let me just sleep and not take the drugs. The advantage of that person is that they encourage us in some areas.” (FGD 9, Male)

Retention support provided by other HIV-positive clients who are open about and have accepted their status can also serve as a visual example of what is possible in terms of the overall health and appearance of someone living with HIV when taking ARVs properly.

“It is so nice to see someone who is also positive. It encourages one by just looking at another person’s health/appearance, one can say I will be taking the medication “if this person looks like this and vice versa.” If you meet people who look healthy, it gives you courage.” (FGD 6, Male)

Consider gender in retention activities implementation.

Overwhelmingly participants thought that all retention methods (e.g., phone, SMS) should be available to both genders, and that frequency and intensity should not be different for reasons related to equity.

“Firstly, we should look at who is the woman and who is the man. I am looking at 1, they are all human beings and have the same life, and they also have rights to live, 100%. I feel they should have the same support there is no reason whether one is a man or a woman, the treatment will be the same.” (FGD 4, Male)

However, they did consider that men and women may have different lifestyles that could influence retention support methods. For example, one male participant noted that men travel more away from home, suggesting that, “you may not find us as we may be out. So, for me, I still think messages or calls are good.” (FGD 3). Another male respondent noted that gender matching would be appropriate for home visits. One suggestion was that when tracers are conducting home visits, they should be in teams of two, a male and a female, to avoid issues related to gender or marital status. Or, if the tracer and client gender were opposite, providing advance notice for home visits would help clients to navigate potential issues with their partner there by preventing any issues that may arise due to partner suspicions.

“They cannot come without asking for permission… So, one can choose if you feel like your spouse will not take it well. You can choose to meet somewhere.” (FGD 6, Female)

For counseling, some also noted a preference for same-sex counseling teams. One female respondent stated that:

“If they are to come here to receive counseling, a man and a woman will not be able to understand each other. They will just be thinking about other things. But with a fellow woman, when you are telling you can also be having some interesting chat and be laughing, and you are understanding the content.” (FGD 8, Female)

Same-sex counseling pairs may also improve peer-to-peer counseling. One female participant reflected on her interaction with a female counselor after returning from an ART gap:

“She encouraged me to the extent that I asked her, ‘will my face look like the way you are looking?’ She encouraged me a lot and she told me, ‘Yes, if you just follow the schedule of taking the medication your face will get back,’ (healed) because the rash was starting from the face to the whole body” (FGD 7, Female).

Improve 2wT education and implementation.

More education on 2wT intervention components is needed to clarify how the messages work and how to interact with the healthcare workers. For 2wT participants, there was some confusion over 2wT frequency and client costs, suggesting a need for improved 2wT awareness and education at enrollment. Some 2wT participants were unclear on the frequency of the weekly motivational message or that SMS delivery confirmation was not provided to confirm client responses. Lack of understanding of 2wT intervention details could lead to reduced 2wT interest or uptake as noted by one client who said, “It shows that none of us can understand the entire text message process” (FGD 2, Male). One 2wT participant did not know that 2wT is free to send and receive texts across networks, stating that they do not respond to 2wT visit reminder messages because of perceived costs from their network provider (TNM vs. Airtel).

“Additionally, on the messages sent, most people fail to respond because the number that we are given for us to respond is TNM line, of which it charges when we respond through Airtel number.” (FGD 4, Male)

Moreover, early implementation weaknesses in the syncing of appointment dates between 2wT and the clinic records led some 2wT participants to receive missed visit reminders when they had already attended the visit. This caused confusion because, “If I responded that I came for drug refill, I am surprised that the following day I would still receive a text message reminding me of the same.” (FGD 2, Female).

Despite identified 2wT weaknesses, there was interest among SoC clients in joining the 2wT intervention, reinforcing the need for more awareness raised within the clinics to enroll interested and eligible clients. “If it’s starting today, I would say enroll me so that I should be receiving these messages.” (FGD 7, Male)

Continue retention support for the lifetime of the client.

Participants felt that retention support should continue as long as the client is on ART because HIV is a chronic, lifelong disease.

“No, they [retention support] should not stop. Similarly, you encourage us because the medication is lifelong. We take them and reach a point where we get tired and think of stopping taking them. When you come or call us then we get courage that we shouldn’t stop. That is why we continue taking medication because of people like you.” (FGD 9, Female)

“There is no end because the treatment is life long, unless if the buddy moves to another country, then you can look for another one, or maybe one dies then we part. If they are alive, there is no parting ways” (FGD 01, Female)

Some participants noted that Buddy ART support should also be extended, from the current 12 months to at least 2 years, ending based on counsellor assessment or determination of retention progress. In contrast, clients expressed a desire for ongoing 2wT support without a predetermined end date.

Disseminate more information to clients about existing retention support.

Lastly, clients suggested several retention interventions that already exist at LT, showing a lack of awareness of the diversity of support and services offered to clients. Clients suggested aligning clinic appointment dates with antenatal or post-natal care appointments for themselves or their children, which LT already tries to do if clients note other scheduled visits at the same facility or hospital campus. Other participants wanted ART pickup in smaller, community-based clinics, reflecting lack of awareness that LT already distributes ART to 7 community-based clinics in Lilongwe. Another person wanted to be able to call the clinic to report a delay in visit attendance, showing that the LT Clinic Hotline is not well known. While suggestions for providing phones or transport are outside the reach of routine retention services, it is noted that clients often lack resources to attend visits.