Informing parents about positive newborn screen results: parents' recommendations

Area of Science:

• Medical Genetics
• Pediatrics
• Public Health

Background:

• Newborn screening (NBS) is crucial for early detection of genetic disorders.
• Positive NBS results can cause significant parental anxiety and distress.
• Effective communication is vital for managing parental reactions to screening outcomes.

Purpose of the Study:

• To examine parental reactions to positive NBS results.
• To identify parental recommendations for improving communication strategies.
• To understand how communication channels affect parental experiences.

Main Methods:

• Descriptive study utilizing dimensional and content analysis.
• Interviews conducted with 203 parents of 106 infants with positive NBS results.
• Analysis of reactions for congenital hypothyroidism, cystic fibrosis, and cystic fibrosis carriers.

Main Results:

• Parental reactions ranged from 'very scary' to 'not too concerned,' with common emotions including shock, panic, worry, and guilt.
• Face-to-face disclosure was preferred by cystic fibrosis and carrier groups; telephone contact by the congenital hypothyroidism group.
• Parents recommended providers be informed, honest, calm, personalized, jargon-free, attentive, reassuring, and assess understanding.

Conclusions:

• Provider-patient communication approach and channel significantly influence parental emotional responses to positive NBS results.
• Tailoring communication strategies to specific conditions and parental preferences is essential.
• Enhanced communication can mitigate negative parental experiences following newborn screening.