Table 2 Examples of participant-cited benefits of youth research participation
Clinical Benefits | Improved Medication Adherence | “They will feel like their good drug adherence is the reason they are participating in research, and this will encourage them to continue to use drugs…. Another benefit is their friends who are not part of the study will be encouraged to also improve on their adherence too, to be like the friend.” –adolescent above 18, involved in R01, female |
Improved Clinic Attendance | “I think they also improve their adherences moving forward, both medications, and both visits, because of a personalized kind of interaction, they also get to learn a lot.” –health care provider, male | |
Higher Quality of Clinical Care | “To themselves I think there will be better quest to get more knowledge, sometimes to get direct care, sometimes they get trial drugs which are superior, sometimes they get fancy things that can help them to remind them about drug adherence, so there is an improved quality of care mainly to the patients who are in research, better outcomes-viral suppression and retention because they are seen more closely and followed up with phone calls and many things making the quality of care better.” –health care provider, male | |
Access to Medication | “The benefit I would seek is that sometimes some clinical research has benefit in itself in that the participants are able to access medication they would never access if they were not participating in the research.” –community leader, female | |
Information Benefits | Learning of Study results | “The other opinion that I have is that once a research study has been successful, those involved should also benefit because they can have seminars to share the information received with others so that they will motivated to participate in a research.” –caregiver, male |
Gaining Knowledge about HIV | “Another deeper benefit which we rarely think about is knowledge. In the process to participating in research, people actually gather a lot of information that they would not otherwise access. So they may get to know quite a bit and sometimes this knowledge is helpful for them in management of their conditions particularly when you are dealing with regular diseases like HIV.” –community leader, female | |
Sharing Information with Others | “They can share the same information with their friends who are also living with HIV. They can also become doctors when they grow up and share the information with other patients.” –adolescent below 18, research-naïve, male | |
Personal benefits | Acceptance of Status | “It also helps someone to accept themselves. Because living with HIV is not the end of living. As long as you take your drugs and exercise it well. There is still a future for you, and you can still make it.” –adolescent below 18, involved in R01, female |
Financial Compensation | “Another thing is that by involving them in research, it may enable them also to get some stipend or reimbursement that will assist them obtain their basic needs.” –chief, male | |
Getting Advice | “And then, you know when we leave them there with the doctor, I see it is good advice that she is given she is told to read hard be determined, take your medication well, and I see that too to be of benefit.” –caregiver, female “They get advice from the doctors, they are told to eat balanced diets, have regular exercises, they should try and live stress-free lives which is a bit difficult. When they follow what they are being told you find that most of them can live a long life.” –chief, male | |
Having Community and Social Support | “The benefits I get are like the encouragement I get to continue moving on so that the more I continue taking the medication which also helps to know my status and how I am, it also helps to abstain from the discrimination from others.” –adolescent above 18, involved in R01, female “Apart from gaining knowledge, yeah, they also get a chance to associate themselves with people who have lived longer with HIV and who are living healthy with HIV so they tend to learn the skills from them. They also learn on how to cope up with it.” –adolescent below 18, research-naïve, female “The research sometimes it helps us know the background of these children…youths, sometimes they open up to the researchers more because they know they are going to help them in knowing more of about their condition, so of the time when we link up together we get to know so many things that these youths are going through.” –health care provider, male | |
Improved School Attendance | “For example, schooling, they won’t drop out of school.” –caregiver, female | |
Opportunity to Share Experiences | “Personally I think it’s a nice feeling when you participate in research [projects], when you talk with people maybe that person had something to air and never knew where to take it, but when research comes ensure that that person gets the opportunity to say what he/she thinks which is a good feeling because when you say something and someone hears you it’s a very nice feeling.” –community advisory board member, female | |
Altruistic Benefits | Development of HIV Care and Policy | “The benefit might not be direct to the one participating, but the data which will be collected will help in the future management of these adolescents. It might not be direct to the person you are dealing with at that moment. It might help in the long run of managing of adolescents and also help the health care workers in managing.” –health care provider, male “There is also benefit because not to this participant, but also to the research community. Yes because at least information is received that informs policy and improves care for generation and generations to come.” –laboratory lead, female |
Improvements to Youth-Friendly Care and Interventions | “From the intervention and then at the policy level policy making, and even the new drugs, new whatever, new devices, new inventions that are focusing on adolescence will be able to assist this age group to be HIV protected or live with HIV in a better way.” –clinical researcher, male | |
Community or Household Benefits | Reduces Stigma | “It reduces stigmatization. They can also educate others who don’t know about their status.” –caregiver, female “Like the research I was previously involved in, it makes someone feel more confident and you learn not to stigmatize yourself. It helps you grow.” –adolescent above 18, research-naïve, female |
Household Benefits | “There also some research that not only take care of the participant, but also the household…So you find the household also gets to benefit from this research. Because for example, if there are studies that give medication, you also ensure that you also get good diet, because I mean, how do you take medicine without diet? …. Or if there are studies that take care … of a participant and they find that the cause of maybe HIV, there could be other effects in the household. You find that some studies take care of such… So the household gets to benefit. And again, by participating in the research, the quality of life is improved. So it is less burden into the household… they do not spend a lot of money in… hospital visits. There is happiness because at least somebody is never sick forever or always.” –laboratory lead, female | |
No Benefits | “There are no benefits that they get.” –adolescent above 18, involved in R01, female | |