Disclosing Study Information to Children and Adolescents: Is what they want, what their Parents think they want?

• Published in: Academic pediatrics 2018-05, Vol.18 (4), p.370-375
• Main Authors: Tait, Alan R., Ph.D, Geisser, Michael E., Ph.D, Ray, Lamira, B.S, Hutchinson, Raymond J., M.D., M.S, Voepel-Lewis, Terri, Ph.D., R.N
• Format: Article
• Language: English
• Subjects: adolescents; assent; children; decision-making; disclosure; ethics; Neonatal and Perinatal Medicine; parents; Pediatrics
• ISSN: 1876-2859; 1876-2867
• DOI: 10.1016/j.acap.2017.06.005

Abstract Objective Despite the importance of child assent, there is little consensus on what information should be disclosed and what information is most important to children for decision-making. This study was designed to compare children’s/adolescents’ priorities for research information with the information parents believe is most important to their children. Methods Child-parent dyads completed separate and independent surveys regarding information (risks, benefits, etc.) that they perceived to be most important to the child in order to make decisions about participating in a hypothetical randomized controlled trial. Parents responded in the context of what information they believed their child (not themselves) would think important. Results 55 parent-child dyads completed surveys. While all information was deemed important, children/adolescents put greater emphasis on privacy and less on knowing the purpose of the study and the benefits compared with what their parents believed was important to their child. Adolescents (13-17yrs) placed greater importance on knowing the procedures, direct benefits, and the voluntary nature of participation compared with younger children (8-12yrs). Parents of older girls in particular placed greater emphasis on their daughter’s need to know the purpose of the study, the procedures, benefits, and voluntary nature, compared to parents of boys. Conclusions Results show that the information priorities of children/adolescents considering participation in a RCT differ from that which their parents think is important to them. Pediatric researchers can use this knowledge to ensure that parents do not conflate their own expectations/priorities with those of their child and that children receive the information they need.