Children in Research: The Experience of Ill Children and Adolescents

Abstract

The purpose of this study was to describe children’s and adolescents’ experiences with clinical research. Thirty-four children and adolescents, age 8 to 22, who had a diagnosis of either diabetes or a hematological malignancy participated. Two major themes were identified: (a) understanding about research and (b) involvement in the decision to participate in the clinical trial. Children’s and adolescents’ understanding of research was influenced by their age, their diagnosis, and their previous experience with research. The involvement in the decision to participate was quite variable across age and disease groups. For instance, the recruitment process was markedly different for children with diabetes than for those with cancer. The structure of the trials for diabetics differed on several dimensions, including duration, offering of monetary incentives, and clear distinctions between standard treatment and experimental protocols.