Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study.
Connie Anderson, Alan Iampieri, Leah Franklin and 3 others
PMID 36323994WHAT IT FOUND
Parents recommended starting re-consenting conversations at 15 to 16, using simple 'transition to adulthood' language.
They said keeping mothers informed could help teens act on invitations, and families wanted adult service resources, not just consent reminders.
Key findings
01Parents recommended starting re-consenting conversations at 15 to 16 and using 'transition to adulthood' rather than 'guardianship' in outreach.
02Parents' top stated motivations for research participation were getting answers (57%) and helping other families (52%).
03Parents said keeping mothers informed could help teens act on re-consenting requests.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study used a small convenience sample of 46 families, and only 13 of 22 teens completed interviews. Only 10 of 13 teens shared thoughts about research participation, so teen views were thin. Diagnoses and other details were based on parent or teen report, not medical or educational records. Almost all parents were mothers (45 of 46), so fathers' views were barely represented. The findings are views and recommendations for research participation, not tested clinical interventions or patient outcomes.
Declared interests
The Simons Foundation Autism Research Initiative funded the SPARK Consortium, and the authors declared no competing interests.
The easy way to misread this
Do not read these recommendations as evidence that a consent strategy works or improves autism care. They come from 46 parents and 13 teens who were already enrolled in SPARK, and the study did not test an intervention or measure patient outcomes.