Parents’ and Adolescents’ Attitudes about Parental Involvement in Clinical Research

Abstract

Study ObjectiveTo understand parent and adolescent attitudes toward parental involvement during clinical trials and factors related to those attitudes. DesignAs part of a study on willingness to participate in a hypothetical microbicide study, adolescents and their parents were interviewed separately. SettingAdolescent medicine clinics in New York City. ParticipantsThere were 301 dyads of adolescents (ages 14-17 years; 62% female; 72% Hispanic) and their parents. InterventionsNone. Main Outcome MeasuresThe interview included questions on demographic characteristics, sexual history, and family environment (subscales of the Family Environment Scale) that were associated with attitudes about parental involvement. ResultsFactor analysis of the parental involvement scale yielded 2 factors: LEARN, reflecting gaining knowledge about study test results and behaviors (4 items) and PROCEDURE, reflecting enrollment and permissions (4 items). Adolescents endorsed significantly fewer items on the LEARN scale and the PROCEDURE scale indicating that adolescents believed in less parental involvement. There was no significant concordance between adolescents and their own parents on the LEARN scale and the PROCEDURE scale. In final multivariate models predicting attitudes, adolescents who were female and had sexual contact beyond kissing, and non-Hispanic parents had lower LEARN scores. Adolescents who were older, had previous research experience, and reported less moral or religious emphasis in their family had lower PROCEDURE scores; there were no significant predictors for parents in the multivariate analyses. ConclusionParents wanted greater involvement in the research process than adolescents. Recruitment and retention might be enhanced by managing these differing expectations.