TY - JOUR
T1 - Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches
T2 - Lessons from the SPARK Autism Study
AU - Anderson, Connie
AU - Iampieri, Alan
AU - Franklin, Leah
AU - Daniels, Amy
AU - Diehl, Katharine
AU - Law, J. Kiely
N1 - Funding Information:
This study was funded by the Simons Foundation Autism Research Initiative (SFARI) through their contractor, Kennedy Krieger Institute (#5060076), and by Towson University.
Publisher Copyright:
© 2022, The Author(s).
PY - 2022
Y1 - 2022
N2 - 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.
AB - 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.
KW - Adolescents
KW - Autism spectrum disorders
KW - Developmental disabilities
KW - Informed consent
KW - Longitudinal research
KW - Qualitative research
KW - Re-consenting, Transition to Adulthood
UR - http://www.scopus.com/inward/record.url?scp=85141164263&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85141164263&partnerID=8YFLogxK
U2 - 10.1007/s10803-022-05774-x
DO - 10.1007/s10803-022-05774-x
M3 - Article
C2 - 36323994
AN - SCOPUS:85141164263
SN - 0162-3257
JO - Journal of Autism and Developmental Disorders
JF - Journal of Autism and Developmental Disorders
ER -