Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study.
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 sens...
| Publicado en: | Journal of Autism & Developmental Disorders Vol. 54; no. 1; pp. 18 - 33 |
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| Autores principales: | , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Springer Nature
Jan2024
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=174819544&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 174819544 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 01623257 AUT jtl: Journal of Autism & Developmental Disorders issn: 01623257 maglogo: N pubinfo: dt: Jan2024 vid: 54 iid: 1 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 174819544 159997003 174819544 174819544 10.1007/s10803-022-05774-x 174819544 ppf: 18 ppct: 15 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study. aug: au: Anderson, Connie Iampieri, Alan Franklin, Leah Daniels, Amy Diehl, Katharine Law, J. Kiely affil: https://ror.org/044w7a341 Department of Health Sciences, Towson University, 8000 York Road - CHP Dean's Office, 21252, Towson, MD, USA sug: subj: Research Subjects In Infancy and Childhood Pediatric Care Consent Ethical Issues Autism Spectrum Disorder Human Child Adolescence Adult Prospective Studies Interviews Parents Qualitative Studies Developmental Disabilities Transition to Adulthood Funding Source Child: 6-12 years Adolescent: 13-18 years Adult: 19-44 years 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. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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