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

Susan L. Rosenthal, Ariel M. de Roche, Marina Catallozzi, Carmen Radecki Breitkopf, Lisa S. Ipp, Jane Chang, Jenny K R Francis, Mei Chen Hu

Research output: Contribution to journalArticle

7 Citations (Scopus)

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.

Original languageEnglish (US)
JournalJournal of Pediatric and Adolescent Gynecology
DOIs
StateAccepted/In press - 2016

Fingerprint

Parents
Research
Adolescent Medicine
Anti-Infective Agents
Hispanic Americans
Statistical Factor Analysis
Multivariate Analysis
Demography
Outcome Assessment (Health Care)
Clinical Trials
Interviews

Keywords

  • Adolescent research participation
  • Clinical trials
  • Parental involvement
  • Sexually transmitted diseases

ASJC Scopus subject areas

  • Obstetrics and Gynecology
  • Pediatrics, Perinatology, and Child Health

Cite this

Parents' and Adolescents' Attitudes about Parental Involvement in Clinical Research. / Rosenthal, Susan L.; de Roche, Ariel M.; Catallozzi, Marina; Radecki Breitkopf, Carmen; Ipp, Lisa S.; Chang, Jane; Francis, Jenny K R; Hu, Mei Chen.

In: Journal of Pediatric and Adolescent Gynecology, 2016.

Research output: Contribution to journalArticle

Rosenthal, Susan L. ; de Roche, Ariel M. ; Catallozzi, Marina ; Radecki Breitkopf, Carmen ; Ipp, Lisa S. ; Chang, Jane ; Francis, Jenny K R ; Hu, Mei Chen. / Parents' and Adolescents' Attitudes about Parental Involvement in Clinical Research. In: Journal of Pediatric and Adolescent Gynecology. 2016.
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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.",
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