Children in Research: The Experiences of Siblings in Research Is a Family Affair

Abstract

The specific aims of this study were to (a) ascertain siblings’ ethical concerns, process, and meaning of their brother’s or sister’s involvement in clinical research; (b) describe siblings’ understanding of the research in which their brother/sister was involved; (c) explore siblings’ perception of sociocultural influences on their brother’s/sister’s willingness to participate in research; and (d) describe how siblings are affected by their brother’s/sister’s research trial. Nineteen siblings (ages 9 to 21) whose brother or sister had been enrolled in a clinical research trial within the past 6 months were interviewed, and the data were analyzed qualitatively. A sibling’s understanding of the clinical research trial was distinctly different depending on his or her developmental age and the illness of the brother/sister. These differences included the invasiveness of procedures, seriousness of condition, and the need for siblings to actually participate in the clinical research treatment.