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Newborn screening for metabolic disorders: parental perceptions of the initial communication of results

Mara Buchbinder1, Stefan Timmermans

  • 1Department of Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7240, USA. mara_buchbinder@med.unc.edu

Clinical Pediatrics
|May 8, 2012
PubMed

Insights

Parents experienced distress from positive newborn screening (NBS) results. Healthcare providers can improve communication strategies to better support families receiving critical NBS information.

Area of Science:

  • Pediatrics
  • Genetics
  • Healthcare Communication

Background:

  • Positive newborn screening (NBS) results can cause significant parental distress.
  • Limited understanding exists regarding how parents receive NBS results and the information provided.
  • Effective communication is crucial for managing parental anxiety following NBS referrals.

Purpose of the Study:

  • To explore parents' perceptions of the initial communication of positive NBS results.
  • To identify key themes in how healthcare providers deliver NBS news and support families.
  • To inform improvements in NBS communication protocols.

Main Methods:

  • Qualitative, exploratory study involving parents of 75 infants referred to a metabolic clinic.
  • Data collected through audiotaped clinical encounters and open-ended interviews.
  • Thematic coding of transcripts to analyze parental experiences and perceptions.

Main Results:

  • Parental responses clustered into three main themes: sources of news delivery, information provision, and mitigation strategies.
  • Findings highlight the communicative resources available to healthcare providers.
  • Communication methods varied, impacting parental understanding and emotional response.

Conclusions:

  • Healthcare providers possess resources to mitigate the distress associated with positive NBS results.
  • Interventions can be developed to optimize the communication of NBS results.
  • Recommendations are provided for enhancing communication processes and future research in NBS.

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