Putting control into parents' hands: Parent experiences with a genomic results e-booklet.

ABSTRACT: We evaluated the clinical use of a customizable, multi-language, Genomic Results Booklet (GRB)-a printable e-booklet co-designed with parents-to provide information and guidance to families post-genomic testing. The GRB provides individual genomic results, with implications and resources, all in family-friendly language. Participants were parents of children offered genomic testing in a pediatric neurology clinic. Two and eight weeks after GRB receipt, parents completed surveys to assess usage of the e-booklet. Parents then had a semi-structured telephone interview about their experiences, which were analyzed using interpretive description. Thirty-four parents received a customized GRB, including versions in Punjabi and Arabic. Seventeen booklets were for pathogenic test results, and the o

SUBMITTER: Adam S 

PROVIDER: S-EPMC12362232 | biostudies-literature | 2025 Aug

REPOSITORIES: biostudies-literature