Comparisons of adolescent and parent willingness to participate in minimal and above-minimal risk pediatric asthma research protocols

Abstract

Purpose: Through the processes of permission and assent, parents and adolescents have a shared involvement in decision-making about adolescent research participation. Yet little empirical data exists examining the prevalence and contexts in which adolescents and parents disagree on research participation decisions. The purpose of this study was to compare parent and adolescent willingness to participate in minimal and above-minimal risk pediatric asthma research protocols.

Method: Thirty-six adolescents diagnosed with asthma and a parent of each, independently rated their willingness to participate in nine pediatric asthma research protocol vignettes. The selected protocols were chosen by an expert panel as representative of typical minimal and above-minimal risk pediatric asthma studies.

Results: Parents and adolescents were significantly less likely to enroll in above-minimal risk studies. However, this was qualified by a finding that adolescents were significantly more willing than parents to enroll in above-minimal risk research. Across all nine studies, parents and adolescents held concordant views on participation decisions 60% of the time, on average. Perception of potential study benefit was the most frequent reason provided for participation decisions by both parents and adolescents.

Conclusion: Parents and their adolescents report substantial discordance in their views about participating in asthma research across a variety of protocols. These differences of opinion highlight the need to carefully consider the process by which families are offered the option of adolescent research participation. Investigators may want to adopt recruitment procedures that involve adolescents in initial discussions, especially for above-minimal risk studies.

Figures

Figure 1

Adolescent and parent concordance on participation decisions across risk levels.

Figure 2

Adolescent and parent participation decisions across 9 research protocols.