Study Objective To understand adolescents’ and parents’ willingness to participate (WTP) in a hypothetical Phase I prevention study of sexually transmitted infections, discordance within adolescent-parent dyads, and expectations of each other during decision-making. Design Adolescent-parent dyads were recruited to participate in a longitudinal study about research participation attitudes. Participants Adolescents (14–17 years old) and their parents (n=301 dyads) participated. Interventions None Main outcome measures Individual interviews at baseline assessed WTP on a six-level Likert scale. WTP was dichotomized (willing/unwilling) to assess discordance. Results WTP was reported by 60% of adolescents and 52% of parents. In bivariate analyses, older adolescent age, sexual experience and less involvement of parents in research processes were associated with higher level of WTP for adolescents; only sexual experience remained in the multivariable analysis. For parents, older adolescent age, perceived adolescent sexual experience, and conversations about sexual health were significant; only conversations remained. Dyadic discordance (44%) was more likely in dyads where the parent reported previous research experience, and less likely when parents reported higher family expressiveness. Adolescents (83%) and parents (88%) thought that the other would have similar views, influence their decision (adolescents 66%, parents 75%), and listen (adolescents 90%, parents 96%). There were no relationships between these perceptions and discordance. Conclusions Inclusion of adolescents in Phase 1 clinical trials is necessary to ensure that new methods are safe, effective and acceptable for them. Given that these trials currently require parental consent, strategies that manage adolescent-parent discordance and support adolescent independence and parental guidance are critically needed.
Understanding the range of descriptions of these dyads is helpful to guide interventions to promote vaccine uptake in a manner that balances provider expertise, adolescent autonomy, and parental involvement.
STUDY OBJECTIVE To understand how adolescents and parents describe a sexually transmitted infection prevention study to a friend. DESIGN Adolescents and parents participating in a study about willingness to participate in a hypothetical microbicide clinical trial were interviewed separately and asked to describe the clinical trial to a friend. Qualitative responses were written down verbatim and coded using a thematic framework analysis. SETTING Adolescent medicine clinics in New York City. PARTICIPANTS The participants consisted of adolescents, 14–17 years old, and a parent (n = 301 dyads) who spoke English or Spanish. Most adolescents (72%) identified as Hispanic and 65% reported minimal sexual experience (i.e. nothing more than kissing). INTERVENTIONS None MAIN OUTCOME MEASURES Qualitative responses were content coded for: 1) overall approach, 2) opinion rendered, and 3) details mentioned using thematic framework. The relationship of demographics, sexual history and recruitment method to how adolescents/parents described the study was evaluated. RESULTS Adolescents differed from parents in their overall approach to describing the study (p < 0.01) with more adolescents than parents providing a “purpose with detail” (54% adolescents vs 31% parents) and less providing a “commentary” description (6% adolescents vs 28% parents). Fewer adolescents (25%) provided an opinion compared to parents (75%) (p < 0.01). A higher proportion of adolescents (70% adolescents vs 48% parents) provided a detail (p < 0.01). Adolescents provided a greater number of details than parents (p < 0.01). CONCLUSION Adolescents in this sample were more focused on the details of the study. Parents were focused on their impression of the study. Adolescents and parents may need to be approached differently about reproductive health studies.
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