Parental experiences of a diagnosis of neonatal diabetes and perceptions of newborn screening for glucose: a qualitative study
- Shepherd, Maggie
- Knight, Bridget A.
- Laskey, Katherine
- McDonald, Timothy J.
DOIAbstract
Neonatal diabetes presents <6 months of life but delays in recognition result in presentation with life-threatening hyperglycaemia/diabetic ketoacidosis. Early identification and rapid genetic diagnosis is crucial and ensures correct treatment/management. Adding 'glucose' to newborn bloodspot screening (NBS) could aid prompt detection but requires evidence of parental acceptance. Objectives: Increase understanding of parental experience of presentation/recognition of neonatal diabetes and perceptions of glucose testing within NBS. Setting: UK families confirmed with a genetic diagnosis of neonatal diabetes, November 2014-2018, were invited to participate. Participants: In-depth qualitative interviews were conducted with 10 parents ...