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Table 3 Theme “Trial Participation Benefits”

From: The research burden of randomized controlled trial participation: a systematic thematic synthesis of qualitative evidence

Subthemes and codes Primary text report excerpt
➢ Altruistic benefits
• It feels good to do good “This enabled women to continue to feel good about having taken part; they experienced the warm glow of having helped others”
• Contribution to future research “If it can make it easier for somebody in the future, count me in”
• To ‘pay it forward’ and reciprocate previous generations’ contributions “And I also looked at it like this: these are studies for the future, and after all I have a daughter and you never know. In that case I’m the kind of person to take part in things for other people, so that it’s better in the future than it is now, for example. What other people have done in the past, I’m making use of now”
• A way to give back to the health care service “Undoubtedly the main motivational factor influencing participants was a desire to ‘give something back’”
➢ Personal benefits
• Regain a sense of control “Specifically, that it provided them with some control, at a time when most felt a lack of control over their cancer experience”
• Improve self-discipline “Also, being enrolled in trials helped several participants to maintain self-discipline, crucial for people with chronic diseases who need to take drugs continuously”
• Less responsibility and workload “This, combined with their fears of developing complications, had led them to value the input of UKPDS professionals who could ‘do the thinking, planning and worrying for [them]”
• Gain research knowledge “All former trial participants said they felt more knowledgeable about trials and research since participating in a clinical trial”
• Increased health status awareness “It also made me aware of any little changes....the answer might be, well, maybe a little different this time, or changed, which made me more aware of myself”
• Experience improved healthcare relationships “Compassion, social support and communication related to development of positive and trusting relationships with the research team”
• Receive special attention “felt privileged to be on a trial. We had a separate chemo facility and we all knew we were at the Ritz”
• Means to be gainfully occupied “Yeah, yeah, I mean, it’s something to do, you know, it’s good fun, it breaks things up. Life gets a bit boring when you are stuck like this, you know”
• Monetary incentives “However, the practical advantage to receive drugs immediately without pharmacy fees was appreciated. ‘Firstly the drugs were free, which I found good. And you did not have to pay five Euros [pharmacy charge], which was also a factor’”