Understanding research benefits
Direct benefits: “Having protection against HIV on a daily basis.” “Help put my partner at ease.” “Help me focus more on the possibility of getting HIV and in turn make me practice better sex.” Community benefits: “Because it would not only benefit myself, but possibly thousands of LGBTQ teens across the country in getting the help they need to prevent HIV.”
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Understanding research risks:
Medical: “That’s [weaken bones] terrifying to me because I already have a very weak immune system.” “[They] don’t know the long term effects.” “Doesn’t prevent STIs.” “Pills can’t be too strong if missing it is a problem.” Privacy risks: “Fear of being potentially outed or getting into trouble with my family.” “Someone seeing the texts or pills.” “Someone glancing over or pick up my phone.” Privacy protections: “No one goes through my phone aside from my friends, and those that do know that I am not straight.” “I usually delete my texts.” “If I was that worried about privacy I wouldn’t be part of that kind of study.”
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Understanding adherence and 3-month check-up requirements
Barriers to adherence: “Taking birth control everyday was too hard.” “I feel the commitment of having to take a pill everyday would be hard for me because I am kinda forgetful.” “Hard to hide from parents.” Facilitators to adherence: “I take birth control and Zoloft in the mornings so adding PrEP to the lineup would be just as easy to remember with or without daily texts.” “[If not in the texting group] there are…apps that help you keep track of medicine.” Return for 3-month check-ups if non-adherent: “I would feel as if they would judge me and/or be disappointed.” “I’d feel bad about messing up the study, but I’d probably go anyway because they might be able to benefit from my errors.” “[I would return] so I didn’t compromise the research.” “In a way [it would] be reflective of what many other teens do.”
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Understanding random assignment
Favorable attitudes (57%): “Allowing us to choose our own group could in some way make the information irrelevant.” “I feel like being randomly put into groups is the fairest way to decide who gets the reminders and who doesn’t.” “I guess I’d be okay being randomly assigned, even though I’d much rather be in group B, knowing that I would be reminded everyday.” Unfavorable attitudes (24%): “Feel nervous waiting to hear.” “Feel a bit like a dog following orders.” “They should do what’s best for me.”
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