Empowerment of parents of infants with congenital heart disease after rapid genome sequencing : April 11, 2025, revised June 20, 2025.

ABSTRACT:

Background

Despite rapid genome sequencing (rGS) being utilized as a first-tier genetic test for infants with congenital heart disease (CHD), little is known about its impact on parental empowerment.

Methods

To address this gap, parents of infants with CHD (≤ 1 year old at the time of inpatient rGS) were asked to participate in an online survey, which measured empowerment using an adapted version of the Genomic Empowerment Scale (GEmS). The scale consists of four subscales that measure emotional management, meaning making, seeking information and support, and implications and planning surrounding a child's diagnosis. Subscale scores were standardized for comparison and coded as above (+) or below (-) the mean. Based on the standardized score pattern (+/-) in each subscale, a

SUBMITTER: Cheney RM 

PROVIDER: S-EPMC12401776 | biostudies-literature | 2025 Oct

REPOSITORIES: biostudies-literature