Fathers' and Mothers' support needs and support experiences after rapid genome sequencing.

ABSTRACT: As early rapid genomic sequencing (rGS) is adopted in paediatric medicine, there is an urgency to understand and address family support needs. This mixed methods study (Peregrin*) examined the experiences of 96 parents, 1-5 years after receiving trio rGS results for their child with a severe early-onset condition. Quantitative outcome measures assessed parental well-being, life satisfaction, and family impact, comparing results to non-clinical population data, between mothers and fathers, and according to child's diagnostic outcome. Qualitative semi-structured interviews explored parents' satisfaction with support, engagement with support networks, and unmet needs. Quantitatively, mothers exhibited elevated anxiety and depression relative to population norms, and there was a lack of strong

SUBMITTER: Dolling H 

PROVIDER: S-EPMC12858987 | biostudies-literature | 2026 Feb

REPOSITORIES: biostudies-literature