Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study

Connie Anderson, Alan Iampieri, Leah Franklin, Amy Daniels, Katharine Diehl, J. Kiely Law

Research output: Contribution to journalArticlepeer-review

Abstract

To explore issues surrounding re-consenting youth in longitudinal studies as they reach legal adulthood interviews were conducted with 46 parents plus 13 autistic teens enrolled in the Simons Foundation Powering Autism Research for Knowledge (SPARK) study. Qualitative analysis focused on family sensitivities regarding guardianship decisions, transition concerns, and the re-consenting process. Questions regarding guardianship were difficult for parents unsure of a teen’s future status. Mothers were key facilitators of re-consenting for soon-to-be-independent teens. As legal adulthood approached, parents were willing to assist teens with re-consenting but needed support, asking for multiple contacts, transition resources, and explanatory materials from the research team. Most teens were not cognizant of SPARK but willing to continue participation once made aware.

Original languageEnglish (US)
Pages (from-to)18-32
Number of pages15
JournalJournal of Autism and Developmental Disorders
Volume54
Issue number1
DOIs
StatePublished - Jan 2024
Externally publishedYes

Keywords

  • Adolescents
  • Autism spectrum disorders
  • Developmental disabilities
  • Informed consent
  • Longitudinal research
  • Qualitative research
  • Re-consenting, Transition to Adulthood

ASJC Scopus subject areas

  • Developmental and Educational Psychology

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