title: 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 approximately 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 approximately 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.
authors.affiliation: Department of Psychiatry, University of Wisconsin, 6001 Research Park Blvd, Madison, WI 53719-1179, USA. atluczek@wisc.edu
authors.forename: Audrey
authors.initials: A
authors.lastname: Tluczek
authors.forename: Rebecca L
authors.initials: RL
authors.lastname: Koscik
authors.forename: Philip M
authors.initials: PM
authors.lastname: Farrell
authors.forename: Michael J
authors.initials: MJ
authors.lastname: Rock
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D001007:Anxiety / Q000453:epidemiology / Q000209:etiology*; D001071:Appointments and Schedules; D001294:Attitude to Health; D002712:Chlorides / Q000032:analysis*; D003071:Cognition; D015331:Cohort Studies; D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000523:psychology; D019005:Cystic Fibrosis Transmembrane Conductance Regulator / Q000172:deficiency / Q000235:genetics; D004252:DNA Mutational Analysis; D004644:Emotions; D005260:Female; D006579:Heterozygote; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D019359:Knowledge; D008297:Male; D015997:Neonatal Screening / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D011584:Psychology; D012306:Risk; D012944:Social Support; D013315:Stress, Psychological / Q000453:epidemiology / Q000209:etiology*; D013542:Sweat / Q000737:chemistry*; D014850:Waiting Lists; D014922:Wisconsin / Q000453:epidemiology
chemical_list: C505032:CFTR protein, human; D002712:Chlorides; D019005:Cystic Fibrosis Transmembrane Conductance Regulator