Genetics follow up after rapid genomic sequencing in intensive care: current practices and recommendations for service delivery.

ABSTRACT: The delivery of rapid genomic sequencing (rGS) to critically unwell children in intensive care occurs at a time of immense pressure and stress for parents. Contact with families after result disclosure, particularly after hospital discharge, presents an opportunity to meet their psychological, medical and information needs as they evolve. This study explores the preferences and perspectives of health professionals and parents of genetics follow up after rGS. Semi-structured interviews were conducted with 30 parents, seven genetic counsellors (GCs) and four intensive care physicians with experience in rGS. Transcripts were analysed using reflexive thematic analysis. Current practices surrounding genetics follow up after rGS were highly variable, resulting in some families not receiving the

SUBMITTER: Lynch F 

PROVIDER: S-EPMC9626620 | biostudies-literature | 2022 Nov

REPOSITORIES: biostudies-literature