Youths' and their parents' attitudes and experiences about participation in psychopharmacology treatment research

Objective: This study was designed to prospectively assess youths' and their parents' attitudes and experiences about participation in clinical treatment research. Method: Pre- and postquestionnaires were administered to 90 youths ages 6-17 years with psychiatric disorders who participated in clinical treatment studies and their parents between August 2000 and March 2004. Results: The majority of youths (63%) and parents (90%) reported that finding out about the youth's problem and receiving treatment were the main reasons for participation in the clinical treatment studies. Percentage of youths and parents, respectively, who confirmed that informed consent issues were discussed were: Purpose of study (96%, 100%), study procedures (94%, 100%), alternative treatment (62%, 94%), and voluntary participation (89%, 99%). Most youths liked their treatment (98%), believed the study proceeded as expected (67%), were glad to have participated in this study (94%), and would participate in another study (65%). Most parents believed the quality of care was good (90%), the study proceeded as expected (96%), and were glad their child participated (99%). Conclusions: The majority of youths and parents had a positive view about their experiences of participating in clinical treatment research, independent of whether or not the youth's psychiatric condition improved.