"I will miss the study, God bless you all": participation in a nutritional chemoprevention trial.

Randomized controlled clinical trials areoften considered to be the ‘‘gold standard’’ forhealth research. Consequently, understandingthe reasons people participate in these trials,especially minority groups who are often un-der-represented in clinical trials, or popula-tions who have chronic illnesses or abusedrugs, is salient for successful recruitment, re-tention, and project design. This paper de-scribes the results of a study that was designedto examine some of the ways in which partic-ipants in a randomized double blind clinicaltrial perceived their participation in the clinicaltrial, and the reasons they gave for continuingin the study. All of the participants were indi-viduals who were using drugs and were in-fected with the HIV-1 virus, and had partici-pated in a chemoprevention trial. The datafrom an exit interview were analyzed themat-ically in order to reveal units of meaning con-cerning participation and continuation in theclinical trial. The analysis revealed 3 higher-lev-el concepts, or themes, that guided participa-tion: increased health awareness, personal en-hancement, and sociability. The data clearlyindicated that involvement and retention inthe trial were directly related to the ways inwhich the participants interpreted the study,perceived the benefits they derived from par-ticipating, and imbued their participation withvalue so that it was important and relevant totheir own perceptions of health, as well as per-sonal and social well being. (