Embracing benefits of participating in an HIV vaccine trial
Reducing risky sexual behaviour
Participation in the HIV vaccine trial was experienced as beneficial to the participants' sexual life. Before the trial, the participants confessed that they were poorly informed about HIV transmission. They stated that the information in the trial enabled them to change their behaviour and practice safer sex. In other words, they became optimistic about safer sexual lifestyles. The male participants said they decreased the number of sexual partners as a result of the information from the trial. They asserted that although risky sexual behaviour was part of their daily lives, they managed to adopt safer sexual practices due to the information in the trial. Other participants asserted that they changed their behaviour at different points along the trial. Some of them changed after a negative HIV test; others were encouraged to maintain positive behaviour after the second and the third DNA injections, something which is exemplified by the following quote:
"For my part, I changed the first day I tested. I think that the test made me change, and the results were clean. Truly, I gained courage, and I was very happy... That has helped me a lot to change my behaviour." (Man 3, married, Group 1)
Besides changing risky sexual behaviour, participants also reported that they advised others to practice safer sex:
"Those seminars helped us a lot because from the first vaccination, we were told that wearing a condom is really important. That one helped because some of us had multiple sexual partners... It [seminar] has helped and strengthened me a lot. I mean, I do not have strange things [risk behaviour].... To a large extent, I was able to advise my friends." (Man 6, married, Group 1)
Women stated that they benefited from the correct information on how to avoid pregnancy and sexually transmitted infections. In addition, the participants believed that the routine HIV testing in the trial contributed to the behaviour change:
"You find testing for HIV is voluntary, but when you are in the research [trial], that voluntarism is not there. So it compels you to protect yourself in any way. Now you find yourself automatically changing your behaviour. It means you are forced to live a certain lifestyle..." (Man 3, unmarried, Group 2)
Acceptability of condom use emerged as an engaging topic for discussion among the participants, who claimed that the information in the trial helped them to understand the value of using a condom to prevent infections and pregnancy. Although other participants were confused whether to consistently use condoms with their stable sexual partners, most of them declared that regular seminars strengthened their trust of condom use, and some admitted they were now being more careful during intercourse even though they were wearing a condom.
Overcoming fear of HIV testing
The participants said that the fear associated with testing for HIV status had been eliminated by the trial interventions. Participants declared that they had more confidence in HIV testing compared to their colleagues who were not in the trial:
"After joining this research, I have gained confidence which I did not have before. That is confidence to test for HIV status, readiness to take whatever test results, something that would be very difficult for other people." (Man 3, unmarried, Group 2)
Also, participants added that during the trial they felt more confident because of the results from HIV testing and reflections on their health status:
"When you look at your [my] own health, and it is progressing well and telling a person that, 'I checked my health status yesterday and I have no HIV infection and my results are here', he/she understands even though I am enrolled in the HIV vaccine trial." (Woman 7, married, Group 3)
Most of the participants said that the issue of HIV testing did not trouble them after enrolling in the trial. They emphasized that they were very careful to protect themselves against HIV transmission.
Privilege of complete medical examination
Enrolling in the HIV vaccine trial was perceived as a privilege in accessing medical services. For instance, participants experienced the trial as a way of being able to have voluntary medical check-ups. Through these check-ups, most of them said that they learnt about their general health status. They appreciated this opportunity because before the trial most of them did not bother to seek professional medical advice. In the trial, they adopted the habit of checking their health status even when they were not sick. The group participants emphasized the same message:
"Even me, I benefited... The first benefit we got is check up; I know my health status on what is going on..."
According to the participants' past experiences, medical check-up was not a priority. They emphasized that they only sought medical check-up when it was necessary. Thus, courage and hope after being properly examined and receiving medical treatment emerged as an important benefit of enrolling in the HIV vaccine trial:
"Everything you checked, you were told by the doctor, that you were okay ... when you went out, you got a relief that you did not have any problem. You see, because if a person had kidney problems, he was given treatment. Therefore, that gave us courage and hope..." (Man 6, married, Group 4)
Changed to better health-seeking behaviour
Before enrolling in the trial, the participants said that they used self- medication. During the trial, however, they accessed professional services through counselling, consultation; proper treatment and regular follow-up. They learnt about the importance of adhering to professional advice throughout:
"Being in the research has influenced me to leave the doctor free to check my health status and decide which medicine to use." (Man 7, married, Group 1)
They said that the tradition of self-prescription was enhanced by perceived lack of trust in doctors:
"Previously, I feared to consult the doctors, and I didn't like it. I perceived them differently. When I fell sick, I bought my Panadol and took it. That is it..." (Man 3, married, Group 4)
Possible causes of hesitations to consult doctors in time of illnesses were aired by other participants. They felt that doctors investigated more than what the clients expected from them:
"First of all you may go to consult a doctor because of 'malaria', but through his professional expertise, he may ask you to give blood from this site [pointing at a common site where blood is taken for tests like HIV]. I think you will even escape to pick the medications, and you will not return for the test results.... This is because of the existing problem [HIV]." (Man 4, married, Group 4)
Overall, participants experienced the trial follow-ups as a way of accessing professional health services which promoted confidence in their HIV status, general health status, and in their relationship with the trial team.
Encountering and handling mistrust about the trial
Dealing with the attitude of mistrust of non-trial health care providers
Despite the opportunities in the trial, the participants faced challenges from health care providers who were not connected to the trial. The participants were unexpectedly forced to interact with health care providers who were not informed or poorly informed about the HIV vaccine trial. Interaction with these providers was difficult. Although they were surprised by the attitude of mistrust among these providers, they managed to use active and passive strategies to defend their decision to enrol in the trial. They shared experiences and how they reacted when they interacted with medical doctors [doctors who were not connected to the trial] facilitating an HIV and AIDS workshop at their workplace as exemplified in the quote:
"This program [HIV vaccine trial] is in the police force, but I feel very sorry for those who joined in because they will be seriously affected' [said a doctor]. After hearing that, I neither responded nor showed up that, I was among the trial participants! I took him as he was." (Man 3, unmarried, Group 2)
This attitude of mistrust was not just among medical specialists. The participants also noted opposition to the HIV vaccine trial from other health care providers. Another participant shared his encounter with a laboratory technologist:
"I can add on that ... it is the same people; those whom we call health experts and who are not in the trial. Somebody who is a laboratory technician... Intentionally, you could see him/her mobilizing people and being the main speaker, misleading them about the trial... Being part of it [trial volunteer], you keep quiet; pretending not knowing what he is talking about ..." (Man 4, unmarried, Group 2).
The participants were confused when faced with mistrust among medical doctors over the trial, especially when they sought medical consultation outside the trial clinic. Despite their expectations that all health care providers would know about the trial, surprisingly, they realised that most of them did not know or were poorly informed. Under such circumstances, the participants stated that they were confused:
"When you tell a person that you are involved in something [HIV vaccine trial], and he/she comments 'he!', in your heart you feel: 'Does it mean that I am lost?'... I met a specialist, the one they call an orthopaedic surgeon. Just by seeing my documents [HIV vaccine trial volunteer], he was shocked in such a way that shocked me too ... then he called his nurse; she also looked at the documents in brief, and then they looked at each other. Things like those, we just say, let us go ahead..." (Man 9, unmarried, Group 2)
Older married men encountered a similar situation and they were also confused by negative comments from health care providers. One participant expressed his feelings after interacting with a medical doctor who was poorly informed about the trial, but he passively managed the situation. He said:
"This thing [vaccine trial] is impossible. Personally, I know the side effects, those of you who joined are insane' [A doctor commented]. These are truly health care experts of whom we expect to be champion in such issues, but they are the main barriers... we just volunteered because of courage... If I die, it is okay, and if I survive 'Insha'Allah', you see? But we were disturbed." (Man 6, married, Group 4)
Generally, the participants expressed disappointment following the reactions of the health care providers outside the trial team.
Confronting discouragement from colleagues
Regarding existing relationships and daily interactions at the workplace, participants' enrolment in the HIV vaccine trial was something that distinguished them from their peers. The participants stated that their time spent at the workplace became less enjoyable during the trial. They said they met discouragement from colleagues in the form of jokes, and rumours that the vaccine trial was not safe. They also noted that the discouragement was frequently accompanied by negative opinions towards them. Sometimes they felt discriminated against, humiliated and upset when colleagues and friends commented negatively about them. They either actively educated them, confirmed that they were HIV negative or passively kept quiet to maintain a peaceful situation. One participant said:
"At our workplace, people joked a lot: 'You have been transplanted with HIV' [colleagues said]. Sometimes it discouraged us; you find yourself arguing with people ...You find somebody scorning you; you just ignore him/her. At most I would call him/her and educate even if he/she did not understand." (Man 6, married, Group 1)
Other participants experienced disturbance when colleagues who were not in the trial stigmatized them in front of other people. One man said a colleague pointed his finger at him in a canteen in front of more than twenty people, 'This is the one who has been transplanted with HIV virus.' [He shouted]. He said the situation forced him to defend that he was only taking part in the HIV vaccine research, not transplanted with HIV, but they [civilians] continued to question him. To clear the doubt he disclosed that he had re-tested and he had confirmed that he was not infected with HIV. Also, other participants added that they had repeated HIV testing in different places to confirm that the vaccine was not infectious:
"I have talked to that one [colleague] for a long time to clarify the truth, and I told him that besides the tests at the trial site, I have been re-tested to see whether I am infected or otherwise. I have tested in different places where they do not even know me in order to gain more confidence." (Man 7, married, Group 1)
Commonly, participants faced difficulty in clarifying the information about the vaccine trial to people because of the novelty of it among community members. They thought they could give up, but they realized that they should continue to educate those who were ready to pay attention:
"We are facing difficulties in educating a person who does not know it [HIV vaccine trial] and make him/her understand. Although in the place where we live, there are people who talk nonsense in front of others, we need to accept them, they are our colleagues, and we cannot avoid them." (Man 4, unmarried, Group 1)
Although the participants stated that the workshops strengthened their knowledge about the vaccine and its safety, they still experienced difficulties in delivering the information to the community. Women felt that the friends believed that the HIV vaccine trial had negative consequences on their reproductive health:
"And another person suspected that I could not give birth because of the vaccine. I mean for example at the workplace, aah, truly God helped us. We have come a long way and now we are breathing... They saw us as people who are infected with the virus...waiting to die and that confused us." (Woman 1, married, Group 3)
Other participants recognized that their colleagues were making signs of contempt behind their back when they passed, inferring that they were already infected. Although they realized that the negative opinions they came across were linked to mistrust of the HIV vaccine in the community, they felt traumatized with such opinions especially during illness episodes. One participant said her boss disappointed at her bedside in the hospital to which she had been admitted for a surgical procedure [non-trial-related]. She said that her boss offended her by saying, 'those people [researchers] are selling you, and they benefit because of you [said the boss]'. She felt disappointed and placed everything on faith. She lamented:
"Given that I was sick, then hearing such words! The only answer I had was: 'If dying is for human beings, living is also for human beings... In the beginning, you take those words, but often they are painful!" (Woman 4, unmarried, Group 3)
Another woman related her experience during illness and how she passively reacted while interacting with colleagues:
"I was suffering from typhoid illness...When I went to the office they [colleagues] told me that, 'You know it is that vaccine that brings such illness'. I remained quiet and asked myself, 'don't they even care that I am sick? To tell the truth those words were painful..." (Woman 6, unmarried, Group 3)
The participants continued to struggle against people who were discouraging them. Although, they realized that some were labelling them as 'people who are confused by enrolling in the trial', they believed such negative views could not change their mind set because of the correct information they had received on the trial.
Convincing the family
The common comfort zone, the family where supportive networks are established, turned out to be a discomfort zone during the trial. Several participants noted mistrust of the trial among members of the family when they said they were participating. Discomfort often emerged when close family members, such as parents, sexual partners, and blood relatives, demonstrated mistrust of the vaccine safety. Under such situations, participants were forced to carefully deal with the doubts to maintain existing relationships. For instance, some men reported that their wives were distressed by the comments from the surrounding communities that their husbands were taking part in a harmful study. Under such a circumstance, they tirelessly educated them. Other participants admitted that their pre-understanding about their families was helpful to deal with the situation. Some of them opted to share the information with their intimate friends, but not their mothers because of perceived different levels of understanding:
"I tried hard to explain to my lover but when it came to the other side, the side of the parents... I didn't tell my mother this issue because I knew it would take time for her to understand..." (Man 3, unmarried, Group 2)
On the contrary, those who shared their enrolment in the trial with relatives, they felt abandoned. However, they passively kept quiet and continued with the trial. One man shared his experience:
"I tried to explain [about the trial] to my relatives. Truly, all of them threw me out of the line [discouraged me]... So, I am alone; they find its okay. When I phoned and told them that I have fever, they say: 'You wait, go ahead!' [The relatives warned]. So those are their current responses. Now even if I have mild-fever, I don't call them." (Man 7, unmarried, Group 2)
Other participants in the group sensed that the reaction from the family members was more negative than that of friends. For example, they noted that some parents were shocked after realizing that, without their knowledge, their sons and daughters were participating in the HIV vaccine trial. One woman shared how her father was shocked and how he forced her to re-test for HIV to rule out any negative consequences of taking the vaccine. After the first two DNAs, she said her father pretended to organize a family event that every family member had to accompany him on the AIDS day, December 1st, to have an HIV test. Thus, the whole family went with him to the HIV testing centre [not at the trial site]. On the contrary, some of the participants experienced comfort from their families. To some extent, they sensed good relationships. Nevertheless, one participant pointed out that the relationship was maintained because the vaccine had no visible side effects.
Therefore, some participants had positive interaction with their families during the trial while others did not. On top of looking healthier, they relied on their individual decision that pushed them to enrol and eventually stayed on until the end of the trial. The following section highlights these individual motives.
Pride of fulfilment and self-respect
Participants felt they had made an important decision and believed that self-sacrifice, self-courage and faith in the vaccine trial were important to accomplish their contribution in the HIV vaccine development. Notwithstanding the discouragement they received, they realized that individual decision was crucial:
"It [discouragement] is there. Others were pressing me until I decided to tell them, 'I have decided to sacrifice myself; I have already sacrificed to rescue this world. If it is a vaccine, then it will help other people... Jesus died on the cross to save others. So, I sacrifice myself too ..." (Man 7, married, Group 4)
Through body gestures, other group participants indicated that this was an experience they could identify with. Most of them reflected on a similar situation when they interacted with colleagues and friends. The participants referred to their core role as an opportunity to protect people and their properties. Thus through participation in the trial, they believed that they would also protect people's health. They emphasized that taking part in the trial was a courageous act to save the nation from the HIV calamity:
"You have power and are not afraid. You sacrifice yourself when you fight for your country ..." (Woman 6, unmarried, Group 3)
Individual decision was the basis of volunteering for the HIV vaccine trial. Thus, to a large extent, the participants managed to deal with the doubts in the trial because of this decision. They also felt they were able to ignore negative comments from others because of confidence they had in the trial from the start, and asserted that participation in the trial was a personal decision sometimes driven by the death of a relative from AIDS:
"To me it is my own decision. When I decide to do something and I see it is beneficial to me, I just do it ...we have lost two relatives [AIDS-related death] from our family. Truly, it hurts me so much. So, when I heard about this vaccine trial, I decided straight away. I mean, nothing can change me." (Man 6, married, Group 1).
Also, they felt confident because of regular contacts with the trial team. They said they experienced warmth and friendliness during such contacts. They boasted that they knew more facts about HIV and vaccine than their colleagues because they attended the workshops.