title: Primary care providers' experiences notifying parents of cystic fibrosis newborn screening results.
abstract: This study examines primary care provider (PCP) experiences with the initial parental disclosure of cystic fibrosis (CF) newborn screening (NBS) results in order to identify methods to improve parent-provider communication during the CF NBS process. PCPs of infants who received positive CF NBS results participated in semistructured phone interviews. Interviews were analyzed using a qualitative content analysis. PCPs acknowledged the difficulty of "breaking bad news" to parents, and emphasized minimizing parental anxiety and maximizing parental understanding. PCPs used a variety of methods to notify parents, and shared varying information about the significance of the results. Variation in the method of parental notification, information discussed, and attention to parents' emotional needs may limit successful follow-up of children with positive CF NBS results. A multifaceted intervention to improve PCP knowledge, management, and communication could improve provider confidence, optimize information transfer, and minimize parental distress during the initial disclosure of CF NBS results.
authors.affiliation: University of Michigan, Ann Arbor, MI, USA.
authors.forename: Caitlin
authors.initials: C
authors.lastname: Finan
authors.affiliation: University of Michigan, Ann Arbor, MI, USA.
authors.forename: Samya Z
authors.initials: SZ
authors.lastname: Nasr
authors.affiliation: University of Utah, Salt Lake City, UT, USA.
authors.forename: Erin
authors.initials: E
authors.lastname: Rothwell
authors.affiliation: University of Michigan, Ann Arbor, MI, USA btarini@umich.edu.
authors.forename: Beth A
authors.initials: BA
authors.lastname: Tarini
mesh_terms: D000328:Adult; D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000523:psychology; D005260:Female; D006282:Health Personnel / Q000523:psychology / Q000706:statistics & numerical data*; D006801:Humans; D007231:Infant, Newborn; D007407:Interviews as Topic / Q000379:methods; D008297:Male; D008824:Michigan; D008875:Middle Aged; D015997:Neonatal Screening / Q000379:methods* / Q000523:psychology; D010290:Parents / Q000523:psychology*; D011320:Primary Health Care / Q000379:methods / Q000706:statistics & numerical data*; D011368:Professional-Family Relations; D014342:Truth Disclosure
keywords: communication; cystic fibrosis; newborn screening
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