Research into parental support needs is informing Cambridge Children's Hospital's commitment to provide a 'whole family' approach to care.
Parents, carers and siblings can become overwhelmed
Sara O'Curry
Advances in genetic testing have enabled families of critically ill children to receive early diagnoses that can open up new options for care and treatments. But, according to new Cambridge research published in the European Journal of Human Genetics, the medical complexity of these, often lifelong and rare conditions, can lead to parental anxiety and distress, as well as uncertainty and upheaval in the family.
The Peregrin study - Parental Experiences of Rapid Early Genomic Results in Infancy - followed up a cohort of mothers and fathers to explore how parents cope and experience support after their child undergoes rapid genomic testing due to a serious early-onset medical condition.
The study, which is informing Cambridge Children's Hospital's 'Whole Family' approach, used questionnaires and interviews to understand parents' emotional wellbeing and the impact on family life, 1 to 5 years after receiving the genetic result.
While over a third of parents of children with a genetic diagnosis reported insufficient support, mothers' and fathers' individual support needs, experiences, and perceptions of support differed.
Lead researcher Dr Helen Dolling (Department of Psychology) says that even the simplest thing, such as the question "How are you?" was different for mothers and fathers:
"Some fathers said that often when they go to clinic appointments with the mother and child, the clinician asks how the child is and then they'd ask the mother 'how are you?', but not ask the father how he is."
