In line with individual-level behavioral theories, perceptions of disease severity and susceptibility, as well as perceived benefits and barriers of staying on treatment, emerged as key determinants of clinic attendance. These were manifested as two primary psychological constructs: personal willingness (motivation) and perceived capacity (self-efficacy).
Most study participants reported having experienced positive physiologic outcomes from treatment, and this tended to increase motivation to stay on ART. Motivated patients trusted antiretroviral drugs, felt a sense of personal responsibility over their treatment, and perceived themselves to be capable of meeting its requirements despite difficulties encountered:
Because these drugs are giving me hope so that I may live, I have only to drag myself although it is far. (female, roadside area)
Even if you get a problem today, you will go there the following day and continue with the drugs because that medicine is your life. (Group activity, males from remote areas)
While some barriers to treatment were seen as beyond personal control, patients emphasized the need for individual persistence in the face of obstacles.
The obstacle is that, maybe when you are very sick, you can’t even walk. To come to the road, to go to the bus stand (...). You arrive there and you stay for a long time. I mean you are hungry and sick (...) at four o’clock you are just still there. Then it is far from here, I mean we get problems, but as you are in search for life, you have only to persevere. (female, roadside area)
However, among clients who were not experiencing physical recovery, “losing hope” could lead to attrition from the program. As mentioned by a group of men brainstorming about a typical community member on ART:
He is ignoring these drugs. Maybe he has used them without any good results, and hence he decided to quit using them completely. Our friend wanted to get better immediately ... (Group activity, males from remote areas)
Regaining health does not automatically lead to strengthened motivation, as in some cases it was interpreted as a sign of declining HIV severity, reducing a patient’s commitment to treatment adherence or leading to interrupted treatment:
... she was in a bad condition, she has used these drugs and her condition became well ... she felt that she was cured, hence there was no need of going to the clinic. It will make her think that she is well, she is just healthy and sound, she doesn’t feel any pain, and from there she will see those things as useless. (Group activity, females from remote areas)
At the community level, the study examined how social norms and support from personal networks affected treatment patterns. First, it emerged that prevailing beliefs around the causes and basic etiology of HIV could reduce motivation for biomedical treatment. Beliefs that HIV is caused by witchcraft, and that it can be cured through spiritual healing and/or traditional medicine are common in Kisesa and other semirural communities in sub-Saharan Africa27,28
and can weaken confidence in ART effectiveness:
God is really able, He can really heal even AIDS. There were rashes on my face but the bishop laid his hands upon me and said that these rashes will disappear, and really after one day, I woke up in the morning of the following day and those rashes had disappeared completely. I think it was just the power of that faith in God that this problem is finished. (male, roadside area)
S/he thinks that Jesus has healed him/her and won’t attend clinic again. (home-based care provider)
I checked the chest and they said it was okay, this one is bewitched .... there is medicine sold in Arusha. It’s called “Ngetwa” ... For HIV ... They said it’s traditional, it’s obtained from the Masai in Arusha ... Ngetwa, people used to talk ... perhaps if we assist this person with Masai medicines, because he is tired of injections .... they said let’s go now to Arusha. (male, roadside area)
Misconceptions and rumors related to the antiretroviral drugs themselves also generate mistrust and confusion, negatively influencing the motivation for initiating therapy among potential patients, as well as contributing to treatment interruption among those already enrolled in the program:
Those drugs make them ... They cut, they really cut ... I mean people are just dying. You just find yourself dying. You die while you are just fat. That is just the belief. (female, roadside area)
Those medicines were so confusing. Sometimes you hear that if you use those medicines you will die. So it used to confuse people so much ... we used to fear it so much that it means if you take these medicines you may die. (male, roadside area)
In some cases, misunderstanding about the incompatability of certain behaviours with treatment, such as drinking alcohol, smoking cigarettes, or engaging in sex, could dishearten patients and lead to decreased levels of self-efficacy.
The other obstacle is that ... you actually go to the clinic, you start by being given the conditions about those drugs and you have a husband at home. When you go to involve your husband, the husband shuns away, you see, he doesn’t like. Now you start thinking that, when I start taking those drugs, it means that I will be just destroying them, you see, I will be using the drugs while at the same time I will be having sex with my husband, therefore there is nothing that I will be doing, it is better by 20 times that I do what? I quit ... (Group activity, females from roadside areas)
Concerning alcohol we were forbidden to take alcohol, if you are using alcohol you should now stop, so perhaps if you break those conditions and take alcohol then those medicines shall be ineffective. So you are not supposed to take alcohol, you are not supposed to smoke cigarette. (male, roadside area)
You shouldn’t take those drugs while at the same time you continue with sexual matters. (male, remote area)
She will first be hesitating ... should she continue with the drugs or should she continue having sex? (Group activity, females from remote areas)
While ambivalence and apprehension toward ART were part of the social environment, a more explicit influence on individuals’ decision-making came from the opinions of sexual partners, family members, friends, and influential community members. Social networks created powerful conduits for both support and discouragement vis-à-vis sustained treatment. Some ART clients dropped out from the program even after having been provided with accurate information at the health facilities when confronted with skepticism from influential peers:
The other thing is that, maybe you get a friend, then s/he starts telling you many things, maybe about AIDS. Then you start thinking: so there isn’t even that need of going to the clinic. That is also an obstacle ... You can get a friend who will start telling you a lot of words ... for example, they may just cheat you that it is AIDS, very many are being told that “you are just being cheated, they are just liars, just quit going to the clinic, what are you going to do there? Just stay at home and maintain your condition.” There are many who are being told so, then actually someone does what? s/he just stays at home. You can be tempted because we hear just many things (...) if they tell her that this is not a disease to be treated at the hospital, it is a disease that can be treated by traditional healers, then she will decide to go to the traditional healers ... (Group activity, females from remote areas)
... but now our clients they understand. But when they return to the community ... some people lie to them: “Ah those drugs are not good. If you take ART you will die and so and so.” But when they come here we are trying to give them information about it that this is not correct (...) some people there at the community, they don’t know their serostatus so they are trying to give our clients some rumors which are not true. (ART clinic staff)
Similarly, other people’s positive perception about ART and in particular the opinions of those already on therapy, influenced individuals’ decisions to test and stay on treatment.
There is a neighbor who told me that had been using them for a long period. Therefore he also told me that I should also go there to check my health. She took me there. I told her let’s go ... I started using these drugs and until now I am continuing using them. (female, roadside area)
Because of my health, I have taken four guys to the VCT center. I tell them “just go and check, sometimes you may think that it’s witches, but actually you are bewitching yourself” (...) they go ... they have started (ART). (male, road-side area)
The experience of directly observing improved health among other ART patients within one’s social network also positively influenced attitudes to treatment:
... when I saw my husband using them (ART) I decided to come to check too. (female, remote area)
... other patients who used to hide themselves have seen their fellows who come to these services are getting relief so they now turn up too. (ART clinic staff)
The level and source of interpersonal support, therefore, emerged as a significant catalyst for self-efficacy and sustained motivation. Treatment supporters (selected by patients as a prerequisite for enrollment in the national ART programme) and family members, including children, were often reported to be important sources of hope and courage and to help individuals integrate therapy into daily life by providing practical support such as reminding of appointments, cooking, bringing medicines home, etc.
I was there with my sister. They kept on giving me courage ... At present I know I can do everything, I am able. I just decided to choose them ... because in case I have problems they can help me. (female, roadside area)
While I was still serious he used to come daily ... He would help me even to look at my card. He would look at my return appointment date and say ‘ahaa, it’s not yet due.’ So when the date approaches he comes to remind me: “don’t forget to go.” I said “I won’t forget.” That’s how he was helping me, insisting to me: “the date is on the card. You can’t forget it.” We kept reciting it: “it’s a certain date.” (male, remote area)
... at home there is my child studying. If you have forgotten it (date of clinic appointment) you just ask him/her: what is today’s date?’ S/he’ll say “it is a certain date.” It’s not difficult; it’s just easy to me. (female, remote area)
It was that guy, that friend of mine ... he told me: “just continue taking the drugs, you shouldn’t have any worries, you will be just cultivating without any problem.” (male, roadside area)
She can be advised, she gets someone to encourage her to continue using those drugs ... Hope will come for one reason: she will get counseling. After getting counseling ... she will be committed, she will understand and she will continue ... (Group activity, females from remote areas)
Resource flows between network members serve as an important marker of social support in a context of entrenched rural poverty, and the ability to obtain financial assistance from a family member or close contact played a key role in individuals’ confidence that they could maintain a treatment program:
You will struggle to get that money, you will even go to your relative to ask him/her for money so that you may go to the clinic, you will go there and s/he will give you. (female, roadside area)
In addition to family members, the level of support received by other CTC clients, post-test club members and health professionals also emerged a factor contributing to retain clients in the ART program.
When I arrived there the doctor told me, “ooh you have been infected with the disease” ... after I received good instructions it encouraged me, I stopped worrying. It’s when I got courage. (female, roadside area)
So we enlightened each other, we met those using it and they said “I used to be in a very bad condition but right now I feel better, you come here walking so you are better.” I was satisfied because if you go to clinic you meet your fellow there so you exchange ideas. (male, roadside area).
While many study participants reported receiving family support, those that did not clearly suffered negative outcomes in their physical and psychological well-being. Perceived lack of family support led some individuals to drop-out from treatment altogether despite high levels of personal motivations to continue and evidence of physical recovery. When family members discouraged ART or suggested alternatives such as visiting religious preachers or traditional healers, patients were reluctant to pursue a biomedical solution further. Some could not sustain participation in the program without sufficient emotional or economic support:
Once you are segregated by your parents, where will you go? If you are being insulted scolded at home you can’t go everyday to the clinic. (Group activity, females from remote areas)
... there are others who are actually giving up hope, we see them even in their families ... they don’t have people to help them. (female, roadside area)
I had asked father for some money in the morning and he told me that we are tired of your diseases. (female, roadside area)
In extreme cases, the social influence of family members was so significant that relatives such as parents or husbands actually made the choices regarding treatment, including taking the decision to interrupt ART.
They tell him/her, aha, this disease has no cure so you are just wasting your time going to hospital. S/he comes to tell you again that “I was told at home ... that I should not go to hospital but I should go to church and I have answered them that I want to go to hospital.” That’s a problem too ... sometimes he/she wants to go and check CD4 but you find that the family takes him/her to traditional healers ... They say “these people just deceive you, you must be bewitched.” So when you return to that family you find that s/he is not there ... Most of such people we get them from a family that has got so many doubts so they have decided to take him/her to traditional healers. (home-based care provider)
You may find that perhaps a woman is forbiden by her husband. You might find that a woman is ready to go there but her husband tells her “but I don’t have that disease perhaps it’s you who has got it. And if you want to continue going there you should leave my place,” so the woman stops to go there for her CD4 results and there is no way of telling that woman to go for CD4 test again. (home-based care provider)
Maybe she may be having her partner at home who will prevent her, what are you going to do there? (Group activity, females from remote areas)
On the positive side, however, local home-based care providers were able to step in and provide a replacement social support network which contributed to client’s self-efficacy. In addition to providing direct assistance with travel or subsistence, home-based care staff was described by clients as providing a considerable level of encouragement both to ART patients themselves and also to their affected families, helping increase empathy.
... we arrived to a place (ART clinic) ... that woman (home-based care provider) was familiar with the place ... after getting that experience, I am now going alone. (male, roadside area)
The attendants will be coming at home to visit from time to time ... they will go to your parents and discuss with them and eventually it will come a stage when your parents will understand. (Group activity, females from remote areas)
She was telling the people at home: ‘you shouldn’t segregate this person because she is suffering from this and this, you should just be close to her’. Every time she was going there at home until her relatives became close. (Group activity, females from roadside areas)