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Case 1. Ugandan gel participant, low PK level, 34 years old, married, financially dependent on husband |
Why joined/stayed in trial: Joined the trial after a friend told her about the study. She felt at risk for HIV because of her husband’s extramarital affairs and was tempted by the reimbursements offered in the study. She felt bound to her commitment to stay in the trial. She said “It was like signing a contract, you could not leave until you had finished with the study.” Adherence highlights: Was disturbed by the feeling of coldness and the volume of gel. It would soil her underpants and “give the feeling of being in your periods.” At one point, she developed a rash, which when combined with other participant’s fear of uterine cancer, increased her concerns. She said, “I was badly affected by it and it got me thinking, if it does cause itching, what happens when it gets deeper......into the uterus? Will it not cause cancer?” Her fear of HIV kept her using gel. She also faced challenges with her husband. She felt obligated to tell him about her participation. He was the breadwinner of the household, paying for rent, food, and school fees - support that outweighed the reimbursements provided at the VOICE clinic: “I had to be more obedient to him than to MU-JHU [referring to the research center].” His reaction was to tell her “that the products would either make me sick or kill me.” Balancing her obedience to her husband with her commitment to the trial, her fear that her husband may infect her, and her concerns about harm and the gel’s physical attributes, she began to insert only a little bit of gel each night at the introitus. Product disposal: She would flush the remaining gel that she did not use down the toilet. Occasionally she shared gels with a prostitute friend.
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Case 2. South African tablet participant, low PK level, 26 years old, unmarried, one sexual partner in past 3 months |
Why joined/stayed in trial: She heard about the study when other women began talking about the benefits they were receiving from VOICE, including the visit reimbursements. She was interested in knowing her HIV status. She continued in the study because she began to see the benefits of the counseling, which she described as caring and comprehensive. Adherence highlights: The same ability to be influenced by others that led her to join the trial, began to challenge her participation during the study. Her partner, family, friends, and others around her created fear of the study and products. Her family and friends told her “death is waiting” if she continued to use the tablets. Other participants told her things that confused her, such as “drinking the pills would cause me to have AIDS.” People around her questioned the study and “said that our blood was being taken to be sold somewhere else. That is when things started to be hard for me.” In this context of little support, her product use became difficult. She would take the pills when she remembered and suggested that her visit date was a prime reminder: “I would drink it when the time for my visit was close.’” Product disposal: She counted her tablets and removed those that she calculated she should have taken, returning the rest to the clinic. If she did not bring back enough by accident, she would claim someone stole them from her cupboard.
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Case 3. Zimbabwean tablet participant, low PK level, 24 years old, married, lives separately from partner |
Why joined/stayed in trial: Was experiencing some health issues and heard that the VOICE study offered health care and testing: “So that was my major reason for joining VOICE, the health services provided.” She continued in the study, in part, because she feared being labelled as HIV positive if she dropped out. Adherence highlights: She was motivated and excited to participate at the start. She began to lose interest as women in the waiting rooms stirred up fear about the tablets. They said the tablets were ARVs, that they would cause cancer, and that they would cause your future children to be born with disabilities: “We also experienced fear, you know that fear that grows from hearing what others were saying would happen if you used the products.” Later she received abnormal liver test results from the clinic and was put on product hold. Her fear increased: “So when they told me about the liver function being affected, I got really scared.’” She continued to avoid the tablets, even a month after she was able to restart. At this point, the challenge of regaining her motivation, her growing fear, her annoyance with the size, taste, and daily schedule of taking tablets made reengaging with the product regimen difficult. Product disposal: She was scared to return tablets to the clinic for fear she would be kicked out of the study, so she flushed unused tablets down the toilet instead.
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