In our efforts to identify facilitators to adherence six main themes emerged. These are presented below, not in order of priority.
5.2.1 Acceptance of HIV status and disclosure
Most respondents (ARV users, community and health care workers) agreed that individual acceptance of HIV status was key to the necessary behavioural change that is required for good health outcomes.
One of the ARV users said:
"Since the beginning, I told myself that this disease is just a disease like any other disease. You should accept yourself."
Similarly, another ARV user said:
"As long as one has accepted his/her situation and is committed to treatment, there will be no problems."
5.2.2 Self-efficacy and the ability to take and adhere to ART
Self-efficacy refers to patients' beliefs about their capabilities and their ability to exercise personal control. Perceived self-efficacy was stated as one of the key variables that was critical to adherence. Some respondents stated that it was important to be convinced that it was possible to take the medication correctly.
One ARV user explained:
"Taking these medicines is a personal decision. When the time to take them comes, I take them regardless of whether I am hungry or not."
One of the strategies suggested by respondents was abandoning a previous lifestyle (e.g. alcohol abuse, womanizing) in order to focus on treatment. Some participants maintained that people who are highly motivated are more likely to be adherent to treatment.
One ARV user described the treatment as one that requires commitment and control:
"This treatment controls one's movement. When you go out, you got to return and take them."
Another ARV user said:
"Problem why patients fail to take treatment is because they lack self-discipline."
5.2.3 Belief in the efficacy of ARVs in treatment/pre-treatment health state
The fear of relapse or perceived vulnerability to negative outcomes from sub-optimal adherence was considered to be a major motivator of adherence. Most of the respondents stated that, despite being often preoccupied with their own health concerns and fears, the availability of ARVs had given them a "new lease of life." Some of the respondents stated that individuals were motivated to begin treatment if they experienced a decline in their health status, believed that therapy would prolong life, and believed that they could cope with the treatment regimen and its potential side-effects. One of the respondents, who had recovered as a result of taking the ARVs stated:
"If you had seen me a few months ago I could hardly get out of bed. I was like this (showing the smallest finger). Now here I am. You cannot even believe it. If you have been there, you will take them (ARVs)."
Another male ARV user also stated in Setswana that "rona re ka bo re seyo," which means: "Some of us would not be here if it were not for the ARVs."
5.2.4 The need to care for others
The desire to stay alive can be greatly reinforced by the recognition that your loved ones might not cope in your absence. Women were found to be always concerned about their children and aged parents. The desire to continue to be around for them for their sake was found to be a critical motivator for most women. These sentiments were shared by other female respondents:
"We give birth to children, and we don't want to orphan our children... I don't want my children to be raised by a step-mother. Fathers are not good at raising children."
"As women, we feel pity for our aging parents, especially if the other children are irresponsible. You wonder who is going to take care of the parents if you were to die first."
"I feel I'm the best thing for my children. I'm afraid of dying and my baby has to suffer without me. My children are the best things that ever happened in my life. And I'm wondering how they would feel if they had to lose me."
5.2.5 Social support
Social support is based on the kind of relationships and interactions that provide individuals with assistance or feelings of attachment. Generally, most respondents agreed that the availability of social support was critical for good adherence to ART.
Children were reported to be among the main providers of social support, with older (primary or secondary school age) children taking a leading role in reminding the parent (often their mother) of pill times. For those in stable relationships, the availability of social support from the partner was determined by whether that partner had tested and, if so, whether they had accepted their status.
One of the respondents said:
"I once went to my mother and told her that I am taking life-long treatment and she accepted me. My husband also accepted me. He is the one who wakes me up to come for treatment."
"My husband is HIV-negative but he always reminds me to take my ARVs. My children also remind me."
5.2.6 Effective adherence counselling
Adherence counselling is aimed at promoting adherence to ARVs and preventing further transmission of HIV. The respondents stated that they had received counselling before the initiation of therapy. The issues covered included: HIV and AIDS; mode of transmission; prevention methods; how ARVs work; the importance of adherence; side-effects and how to minimize them; interactions between ARVs and other medicines (including traditional medicines) and alcohol. The effectiveness of the counselling process was highlighted by some respondents who stated that, even though they do experience side-effects, they continue to take the medicines because they were warned about possible side-effects and informed that they would go away. Some also said they were given written information about this to take home.
One of the female ARV users said:
"I learnt that I should not skip the medicines and I should adhere to the stipulated time. At one stage I skipped them and took them after the stipulated time. I told my nurse and I was assisted."
Some of the participants pointed out that there was also a need for continued counselling. One female ARV user said:
"Even though initially we are given a lot of information, counselling is not adequate because it is only done once. Follow-up at home should be done to find out if one is really taking the medicines."
Similarly, a health care provider pointed out that:
"Patients are given information during the initiation of treatment but it is necessary to continue reminding them."