Marina Catallozzi1, Ariel M de Roche2, Mei-Chen Hu3, Carmen Radecki Breitkopf4, Jane Chang5, Lisa S Ipp5, Jenny K R Francis6, Susan L Rosenthal7. 1. Department of Pediatrics, Columbia University Medical Center-College of Physicians and Surgeons, New York, New York; New York-Presbyterian Hospital, New York, New York; Heilbrunn Department of Population & Family Health, Columbia University Medical Center-Mailman School of Public Health, New York, New York. Electronic address: mc2840@cumc.columbia.edu. 2. Department of Pediatrics, Columbia University Medical Center-College of Physicians and Surgeons, New York, New York. 3. Department of Psychiatry, Columbia University Medical Center-College of Physicians and Surgeons, New York, New York. 4. Department of Health Sciences Research, Mayo Clinic, Rochester, Minnesota. 5. Department of Pediatrics, Weill Cornell Medical College, New York, New York. 6. Department of Pediatrics, Columbia University Medical Center-College of Physicians and Surgeons, New York, New York; New York-Presbyterian Hospital, New York, New York. 7. Department of Pediatrics, Columbia University Medical Center-College of Physicians and Surgeons, New York, New York; New York-Presbyterian Hospital, New York, New York; Department of Psychiatry, Columbia University Medical Center-College of Physicians and Surgeons, New York, New York.
Abstract
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 AND SETTING: 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 6-level Likert scale. WTP was dichotomized (willing/unwilling) to assess discordance. RESULTS: WTP was reported by 60% (182 of 301) of adolescents and 52% (156 of 300) 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%, 132 of 300) was more likely in dyads in which the parent reported previous research experience, and less likely when parents reported higher family expressiveness. Adolescents (83%, 248 of 299) and parents (88%, 263 of 300) thought that the other would have similar views, influence their decision (adolescents 66%, 199 of 300; parents 75%, 224 of 300), and listen (adolescents 90%, 270 of 300; parents 96%, 287 of 300). There were no relationships between these perceptions and discordance. CONCLUSION: Inclusion of adolescents in phase I clinical trials is necessary to ensure that new methods are safe, effective, and acceptable for them. Because these trials currently require parental consent, strategies that manage adolescent-parent discordance and support adolescent independence and parental guidance are critically needed.
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 AND SETTING: 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 6-level Likert scale. WTP was dichotomized (willing/unwilling) to assess discordance. RESULTS: WTP was reported by 60% (182 of 301) of adolescents and 52% (156 of 300) 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%, 132 of 300) was more likely in dyads in which the parent reported previous research experience, and less likely when parents reported higher family expressiveness. Adolescents (83%, 248 of 299) and parents (88%, 263 of 300) thought that the other would have similar views, influence their decision (adolescents 66%, 199 of 300; parents 75%, 224 of 300), and listen (adolescents 90%, 270 of 300; parents 96%, 287 of 300). There were no relationships between these perceptions and discordance. CONCLUSION: Inclusion of adolescents in phase I clinical trials is necessary to ensure that new methods are safe, effective, and acceptable for them. Because these trials currently require parental consent, strategies that manage adolescent-parent discordance and support adolescent independence and parental guidance are critically needed.
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Authors: Amelia Knopf; Claire Burke Draucker; J Dennis Fortenberry; Daniel H Reirden; Renata Arrington-Sanders; John Schneider; Diane Straub; Rebecca Baker; Giorgos Bakoyannis; Gregory D Zimet; Mary A Ott Journal: JMIR Res Protoc Date: 2020-03-30