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

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 other 17 were for noninformative results. The surveys showed that all families would recommend the GRB and had used its resources or supports. About 80% shared it with others, and 67% described it as helpful in future planning. Analysis of 20 parent-interviews revealed that parents valued understandable, relevant information; a written e-pamphlet; a list of appropriate resources; and practical guidance. The GRB is valued by parents to explain their individual genomic testing results, to provide useful supports, specific resources, and a sense of direction in the weeks after receiving results.