Collectivism in the HIV vaccine trial participation
Individual motivations
Participants articulated several motives for participating in the trial. These included: personal pride, and confidence in a decision to participate in the trial. Some quotations illustrate these motivations:
I will personally see myself as a hero (Young policeman 2, Group 4).
I will be confident and able to say 'I was among the participants' [in the HIV vaccine trial] (Young policeman 3, Group 4).
Participants expected to gain recognition that they felt they deserved after taking part in an exercise that aimed at saving the nation. They wanted to show off that they had helped to make the HIV vaccine trial successful:
There is a saying: 'He who plays in his or her home ground gets a reward...' I will be proud of myself, like those who fought for independence, that I was among those who fought for the vaccine (Low ranking policewoman 1, Group 3).
Altruism
In addition, they referred to their obligation as police officers, that the role of protecting civilians could motivate them to take part in the trial. So, they included, fulfilling moral principles and self-sacrifice to save lives of millions of people who are dying of HIV infection:
I think this [taking part in the trial] is part of motivation in my duty because if I get vaccinated and make it successful, I will save the civilians whom I protect. And to work as a police officer, there must be people to protect. No police force without people. I think this is one of the moral principles that I should do (Low ranking policewoman 10, Group 3).
Participants from other groups emphasised other positive results that would be experienced from the trial participation:
When the results are good and successful, as a participant I will feel like the one who makes success in the trial. I will be proud for making vaccine successful. I will be proud in the community for making the trial successful (Low ranking policeman 2, Group 6).
The young policewomen based their altruistic reasons for taking part in the trial on examples from religion. They felt very responsible, and saw their participation as a sacrifice for others:
I can imagine the vaccine like what Christians say: Jesus was supposed to be crucified on the cross to save lives of others, and that person [a volunteer] will be the victory of saving the nation and the world (Young policewoman 5, Group 1).
In contrast, an older policewoman argued that religious issues and participation in the HIV vaccine trial are conflicting issues. She saw this conflict from the fact that the trial rules required participants to postpone giving birth to children, which is contrary to their religious beliefs. She explained:
And we know that with religion, God said 'Give birth to children, to multiply'. So when it comes to religion, you [researchers] differ ... It is important (Older policewoman 3, Group 2).
Overall, participants expressed their reason for taking part is to help to make the trial successful.
Concern for significant others
As a counterweight to altruism, the fear of possible loss of close relationships was mentioned as a reason for not volunteering in the trial. The participants signalled that they were confused by the reactions from their friends about their decision to volunteer in the trial:
I volunteer for the vaccine. Where I go friends will start telling me 'You were healthy and you have been given AIDS'. If they say so, I will be affected psychologically (Young policeman 4, Group 4).
The low ranking policewomen felt that colleagues warned them against participation when they shared their intent to take part in the trial. The colleagues warned that they could get AIDS from the trial and would thus be abandoned. Young policewomen also described meeting similar reactions, and subsequently deciding not to participate to avoid being abandoned:
Every time I told my colleague policewomen about this [the HIV vaccine trial] they challenged me.... 'Go first and get it [the vaccine] because you are HIV positive.'... So I decided to quit... (Young policewoman 2, Group 1).
Other participants in the group agreed and supported this discussion through gestures and body language.
Those living with their parents or spouses, and those who had a fiancée said that they feared that participating in the trial might disrupt existing close relationships. Women feared that their intent to take part would signal to their male partners that they have an HIV infection. They said that these opinions could create conflicts with their partners. Young men, in particular, expressed concern about their intimate relationships:
The fiancée won't trust you from the moment you plan to get the vaccine. She will think that by taking part you are infected straight away ... She will believe that you have been given the virus and so she will also be infected (Young policeman 2, Group 4).
Another participant argued that problems with a fiancée arise only if she does not understand about the HIV vaccine trial. He added:
I think there will be a problem with the fiancée because I have one. Perhaps I will explain to her that I have joined the HIV vaccine trial. If I will not explain properly to make her understand, everything will be interrupted... that will be the end of the relationship... (Young policeman 9, Group 4).
Others in the group laughed and nodded as a sign of an experience to identify with.
Existing social relationships and dependencies (parents expecting the young people to support them in their old age) were described as barriers to participating in the trial. The participants said that parents have a strong influence on the lives of young people. Young people saw themselves as an asset for the future with responsibilities towards their parents. These young people speculated that parents would expect them not to take part in the trial since they depend on each other. The parents were said to worry that the vaccine could cause side effects:
Some of us are taken care of by our parents. Now what would your father say if you get problems? They [parents] will query: 'Don't you know that we depend on you?' (Young policeman 6, Group 4).
The caregivers also experienced resistance from relatives against their taking part in the vaccine trial. Their relatives in some cases stated that taking part in the trial would be like killing oneself. Participants suspected that these relatives would warn them against enrolling in the trial because of unknown side effects. The participants became more worried when knowledgeable people cautioned them. One participant shared:
Personally, I came across such a situation two months after the seminar. I took my documents home [the HIV vaccine trial education materials]. When my relatives read those documents, they were the first ones to warn me: 'Leave it [the trial], and leave it completely'. Many of them, including a doctor from a cancer institute... Now even a person with education became the first one to oppose me. What about those with no education? (Caregiver 1, Group 8).
Nevertheless, members of the caregiver group said that some of their relatives would support participation in the trial if they understood the importance of the vaccines. They related this positive assumption based on the experiences of people who take their children to receive available vaccines to prevent various diseases. Likewise, it is possible that they could motivate others to participate in an HIV vaccine trial by referring to a case of HIV infection.
Reproduction and pregnancy norms
Participants voiced concern over restrictions imposed while participating in the trial that would threaten the desire to become pregnant. More often they were concerned about the views of others on the effects of taking part in the HIV vaccine trial on their reproductive ability. Both men and women in the study expressed a fear of postponing pregnancy and described how they had been subject to negative views from others. Young unmarried men without children expressed a loss of confidence in the vaccine trial after recalling parents' warnings:
A parent can tell you that: 'If you are vaccinated and get married you will not get children'. He or she thinks if you get the vaccine you will not get a child... (Young policeman 1, Group 4).
Another participant emphasised:
If you get vaccinated you will not get children when you get married ... you will not get a child... (Young policeman 5, Group 4).
Older policewomen also expressed concern over the vaccine rules on pregnancy norms and the possible reactions of sexual partners. These women feared that postponing pregnancy because of enrolment in the vaccine trial could be a major concern to their husbands and boyfriends:
The problem is with the family [husband], that is when it becomes difficult. I get the vaccine and my husband wants a child then ... I think problems will start there (Older policewoman 1, Group 2).
Another group member stated:
There is a problem with girlfriend and boyfriend. For example, with the boyfriend he could stay with a woman for a long time, outside marriage lock and he wants to have a child with her ... if she postpones, of course the friendship will end (Older policewoman 4, Group 2).
They also raised personal doubts about their reproductive capacity:
Is there any possibility for me to get a child? Won't they [the researchers] just destroy my gametes! (Older policewoman 3, Group 2).
Young women reasoned around the possibility of becoming infertile after taking part in the trial:
There are some women without a child and other people tell them that following vaccination they will never conceive! (Young policewoman 7, Group 1).
In addition, the low ranking policemen expressed concern over possible side effects of the vaccine on reproductive health, including foetal abnormalities and impotence in men. They suspected that children might be born with abnormalities because of drugs such as oral contraceptives. They reasoned that similar effects could arise from the HIV vaccine. They also suspected the vaccine could make men impotent:
People know exactly that children are being born with abnormalities because of drugs [contraceptives]. And now an HIV vaccine has arrived! (Low ranking policeman 3, Group 6).
Another policeman added:
People are thinking a lot about this vaccine, some say why should we be tested with this vaccine? Why not the whole country? Another one says this will finish us, another one that they [the researchers] want to make us impotent ... (Low ranking policeman 5, Group 6).
Thus, fear among participants was connected with reproduction and pregnancy issues.
Responsibility for others
Another factor for which participants felt responsible was their families, particularly their children. They worried that an experimental vaccine may have a negative outcome, in the extreme case death, if the trial failed. Older married men felt that they were consciously accepting the possibility of death by taking part in the trial, and that this may, in turn, affect the children's future. Although they accepted that death is natural, they said they would prefer a natural death:
Psychologically it will be bad. We know dying is unavoidable but you can never go and stand on the road and let the car knock you down and you die! Nobody wants to die. All of us here [he pointed to others in the group], we want to stay with our children until they see the last tooth getting out... (Married policeman 1, Group 7).
Lack of insurance was described as aggravating the consequences of death that may result from taking part in the trial. They requested that life insurance for their families be guaranteed following their decision to take part in the trial:
Will I be insured if I die after introducing the virus? What will I leave my children with? We have African families ... One thinks that if I die after being vaccinated; won't I leave them [the family] in difficulties? I better not go for vaccine to be implanted [with HIV in my blood]... (Low ranking policewoman 1, Group 3).
Others in the group confirmed the possibility that people would not dare to take part in the trial because of uncertainties about their children's future in the event of a vaccine-related death.
Uncertainty of risks and opportunities
Risks for HIV infection, myths about the vaccine's side effects
Participants expressed a fear of negative outcomes from an experimental vaccine. They believed that the outcome of the vaccination was uncertain. They expressed worries that the trial would affect them in diverse ways. They believed that the vaccine consisted of two shots, the first one containing the HIV virus and the second [boost] to erase the HIV infection. The males shared:
I think one will not take part in the trial because in the trial viruses must be introduced. If it is for HIV, you are given that vaccine... (Young policeman 12, Group 4).
Another participant added:
How can you protect something [a healthy person] without something [the existence of HIV]? I use a gate because I know thieves might come inside to steal. So how can you put a vaccine if you don't have HIV? The main belief is that you cannot protect something that does not exist (Young policeman 5, Group 4).
The participants believed that HIV could be transmitted through either the vaccine or unsafe sex. They reasoned that getting HIV through the vaccine involves pain; while with unsafe sex it involves pleasure. Married policemen explained why a fear of HIV transmission by unsafe sex should differ from that of the vaccine. One participant commented:
There [in sexual intercourse] you enjoy. That is what it means. It is not like when you are being vaccinated. There [sex] you know you are straightforward enjoying. So it is right if I get infected (Married policeman 7, Group 7).
Another participant added another aspect of infection through sex:
You know with sex, it is imaginary. One goes thinking that he is safe and may be also my partner is safe. You see when doing sex, one does not know... That is the way it is, but sex and vaccine differ a little bit (Married policeman 2, Group 7).
Another fear arose from the belief that participating in the trial would introduce the HIV to participants, who would in turn infect their spouses.
In other groups, participants had different views on how vaccines work. They perceived that an HIV vaccine might contain the live virus, which could cause HIV infection, and wondered about how the same vaccine could provide protection. They shared their perception in the following way:
Most people say you will be given the HIV vaccine first, and then you get the medicines. Others said after being vaccinated you will be told to go and engage in sex to see if you will get HIV infection or not... (Young policewoman 6, Group 1).
Others expressed a fear of seeing a needle with vaccine directed towards the skin as an indication of both physical harm and the possibility of death. One participant pointed with emotion at his upper arm muscle where the vaccine would be injected, believing that it signalled death or survival as the only possible outcomes to expect from the moment the vaccine is injected. He stated:
When they do it on me pa-a-p [he was pointing at the vaccination site on his upper arm] ... one leg is in [life] and another is out [death] and this makes people worry so much (High ranking policeman 5, Group 5).
Thus, they reasoned that multiple risks could affect their decision about taking part in the HIV vaccine trial. Such worries were fuelled by inadequate knowledge and myths about the vaccine.
Time of knowing HIV status
The time of knowing whether one is HIV infected or not was also discussed. The follow-ups and routine HIV-testing associated with participating in the trial will provide early knowledge about whether one is infected, sooner than would be the case if infected through unsafe sex. They viewed the revelation of their status too early as a problem, and therefore people are more afraid of the HIV vaccine than they are of AIDS. One participant remarked:
Do you know why people are more afraid of the vaccine than AIDS itself? They will become aware earlier [that they are HIV positive]! When she or he comes for testing, she or he will know that he or she is infected. All these will be because of vaccine. Second, is the belief that once I go to get the vaccine I will be counted among the infected. So, fear is fixed in the heart that, what if I die? I have the virus introduced in the body. ... It is better you look for it [HIV through unsafe sex] yourself rather than being implanted (Low ranking policewoman 11, Group 3).
The caregiver group had more positive views towards the vaccine trial than the other groups. Their experience had convinced them that it is not possible to be infected with HIV through this vaccine. They did, however, express concern about coping with results from any health test, which is discussed in the following section.
Medical check ups: fear versus opportunities
The participants expressed another fear arising from the thorough medical check ups that were a condition for inclusion in the trial. These check ups might reveal that they were infected with HIV or had other life-threatening diseases. A participant expressed:
You [the researchers] are saying one should undergo testing of everything in the body to see what problems are there. One could have life-threatening condition. Now when he or she is told by another person that he has an untreatable disease, that person will start weakening slowly. Some people can go for testing but cannot take results. I think testing is an issue! (Caregiver 6, Group 8).
Others, on the other hand, saw this complete medical check up as an opportunity for receiving free medical services for the diseases that may be discovered:
Surely, I will be motivated as I think the big issue is to be checked. It's useful for me since if I am found with problems, I will be attended by experts. I will be thankful since I will be given immunity [treatment] (High ranking policeman 7, Group 5).
This issue of free medical care as a benefit was discussed in other groups:
This check up can reveal some diseases that will be treated at the researchers' cost. This is a big advantage, to be treated free and know your status [health status] (Young policeman 2, Group 4).
Another participant insisted:
I think the big issue here is that motivation of health services. The big motivation is to get free medical services for the participant ... (Low ranking policeman 3, Group 6).
Researchers' assurance and mistrust
Participants expressed trust over what they regarded as the explanations by the skilled researchers about the benefits of vaccine trial and therefore they positioned themselves as recipients. One caregiver said:
I think the one who can influence is you [the moderator or researchers], with the knowledge you have or the one who gave you education. It is a person with this knowledge who can influence you (Caregiver 2, Group 8).
Participants reasoned that the police force may have been selected for the vaccine trial because of the large number of police officers lost through AIDS. Some participants, however, expressed the suspicion that the researchers intended to implant viruses in them instead of preventing the infection. They speculated that the researchers were hiding the truth about the effects of the vaccine:
They [researchers] are liars. They will plant virus on us! ...Why don't they try with animals? (Low ranking policewoman 12, Group 3).
This mistrust seemed to arise from the fact that the vaccine was imported to the country. The participants reasoned that if such a vaccine had been proved safe after testing in animals and then used on human beings elsewhere, there was no need to test it again on Tanzanian police officers. They argued that the researchers in the vaccine project might benefit financially from the trial:
They [the researchers] already got money from there [donors]. Now to prove they have done the job they are moving around here... A neighbour told me not to engage in the trial (Low ranking policeman 1, Group 6).
In summary, participants expressed doubts and fear concerning taking part largely because of inadequate understanding of the Phase I or II HIV vaccine trial. Nevertheless, they saw that the trial offered certain opportunities.