Psychosocial Risk Associated With Newborn Screening for Cystic Fibrosis: Parents’ Experience While Awaiting the Sweat-Test Appointment

Abstract

Background. The psychosocial effects on parents of infants with abnormal results in cystic fibrosis (CF) newborn screening (NBS) that uses genetic testing remain unclear. Methods. Twenty-eight individuals representing 14 families participated in grounded theory interviews ∼6 months after their child’s positive NBS results for CF. Participants also completed the Center for Epidemiologic Studies Depression Scales (CES-D) at their infant’s sweat-test appointment (n = 51) and/or ∼6 months after the sweat test (n = 35). Results. Most parents experienced high levels of emotional distress during their wait for the sweat-test appointment (CES-D score, mean ± SD: 16.5 ± 6.7; 43.1% in the clinical range; median wait: 7 days; range: 3–35 days). CES-D scores of these parents were also significantly higher than those of comparison parents. Interviews showed that parental cognitive uncertainty and emotional distress were influenced by the parents’ prior knowledge of NBS, CF, and their carrier status; parents’ adjustment to their new baby; and the physicians’ approach to informing parents. Parents’ coping strategies involved requesting a sweat test as soon as possible, searching for information, assessing the infant’s risk/health, seeking support, praying, or not talking with others. Conclusions. The waiting period from notification regarding positive NBS results to diagnostic test results can be psychologically distressing to parents, causing depressive symptoms that vary depending on their perceptions about the likelihood that their infant has CF. Implications for future research examining psychosocial interventions for NBS are discussed.