I am a 2-year PhD student at the Centre for Family Research. My study is entitled: Psychosocial impact of paediatric early rapid genomic testing and diagnosis: A mixed methods study of parental adjustment, adaptation, risk and resilience (PEREGRIN*). This is a follow-up study with parents of children who were recruited to the Next Generation Children (NGC) project between 2016 – 2020. NGC project offered rapid trio (child and both parents) genomic testing (whole genome sequencing (rWGS)) to seriously ill children in Neonatal and Paediatric Intensive Care Units and those referred for tertiary care in Paediatric Neurology and Genetics Clinics.
The aims of this follow-up research are to: (1) explore parents’ experiences of the early genomic testing and diagnosis on their journey to parenthood, and to clarify specific benefits or harms of early rWGS. (2) Identify important factors for family adjustment and adaptation.
