Susan L Rosenthal1, Ariel M de Roche2, Marina Catallozzi3, Carmen Radecki Breitkopf4, Lisa S Ipp5, Jane Chang5, Jenny K R Francis6, Mei-Chen Hu7. 1. Department of Pediatrics, Columbia University Medical Center - College of Physicians and Surgeons, New York, New York; Department of Psychiatry, Columbia University Medical Center - College of Physicians and Surgeons, New York, New York; New York-Presbyterian Hospital, New York, New York. Electronic address: slr2154@columbia.edu. 2. Department of Pediatrics, Columbia University Medical Center - College of Physicians and Surgeons, New York, New York. 3. 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 and Family Health, Columbia University Medical Center - Mailman School of Public Health, New York, New York. 4. Department of Health Sciences Research, Mayo Clinic, Rochester, Minnesota. 5. New York-Presbyterian Hospital, New York, New York; 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 Psychiatry, Columbia University Medical Center - College of Physicians and Surgeons, New York, New York.
Abstract
STUDY OBJECTIVE: To understand parent and adolescent attitudes toward parental involvement during clinical trials and factors related to those attitudes. DESIGN: As part of a study on willingness to participate in a hypothetical microbicide study, adolescents and their parents were interviewed separately. SETTING: Adolescent medicine clinics in New York City. PARTICIPANTS: There were 301 dyads of adolescents (ages 14-17 years; 62% female; 72% Hispanic) and their parents. INTERVENTIONS: None. MAIN OUTCOME MEASURES: The 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. RESULTS: Factor 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. CONCLUSION: Parents wanted greater involvement in the research process than adolescents. Recruitment and retention might be enhanced by managing these differing expectations.
STUDY OBJECTIVE: To understand parent and adolescent attitudes toward parental involvement during clinical trials and factors related to those attitudes. DESIGN: As part of a study on willingness to participate in a hypothetical microbicide study, adolescents and their parents were interviewed separately. SETTING: Adolescent medicine clinics in New York City. PARTICIPANTS: There were 301 dyads of adolescents (ages 14-17 years; 62% female; 72% Hispanic) and their parents. INTERVENTIONS: None. MAIN OUTCOME MEASURES: The 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. RESULTS: Factor 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. CONCLUSION: Parents wanted greater involvement in the research process than adolescents. Recruitment and retention might be enhanced by managing these differing expectations.
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Authors: Jane Chang; Lisa S Ipp; Ariel M de Roche; Marina Catallozzi; Carmen Radecki Breitkopf; Susan L Rosenthal Journal: J Pediatr Adolesc Gynecol Date: 2017-10-13 Impact factor: 1.814
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Authors: Marina Catallozzi; Ariel M de Roche; Mei-Chen Hu; Carmen Radecki Breitkopf; Jane Chang; Lisa S Ipp; Jenny K R Francis; Susan L Rosenthal Journal: J Pediatr Adolesc Gynecol Date: 2016-07-02 Impact factor: 1.814
Authors: Rebecca K Tsevat; Carmen Radecki Breitkopf; Sara E Landers; Ariel M de Roche; Christine Mauro; Lisa S Ipp; Marina Catallozzi; Susan L Rosenthal Journal: J Empir Res Hum Res Ethics Date: 2018-08-13 Impact factor: 1.742