Factors that influence parents' experiences with results disclosure after newborn screening identifies genetic carrier status for cystic fibrosis or sickle cell hemoglobinopathy

Jenelle L. Collins, Alison La Pean, Faith O'Tool, Kerry L. Eskra, Sara J. Roedl, Audrey Tluczek, Michael H. Farrell

Research output: Contribution to journalArticlepeer-review

17 Scopus citations

Abstract

Objective: Newborn screening (NBS) identifies genetic carriers for sickle cell hemoglobinopathy and cystic fibrosis. We aimed to identify factors during initial NBS carrier results disclosure by primary care providers (PCPs) that influenced parents' experiences and reactions. Methods: Open-ended responses from telephone interviews with 270 parents of carriers were analyzed using mixed-methods. Conventional content analysis identified influential factors; chi-square tests analyzed relationships between factors and parent-reported reactions. Results: Parents reported positive (35%) or negative (31%) reactions to results disclosure. Parents' experiences were influenced by specific factors: content messages (72%), PCP traits (47%), and aspects of the setting (30%). Including at least one of five specific content messages was associated (p< 0.05) with positive parental reactions; omitting at least one of four specific content messages was associated (p< 0.05) with negative parental reactions. Parents reported positive reactions when PCPs avoided jargon or were perceived as calm. Parents reported negative reactions to jargon usage and results disclosure by voicemail. Conclusion: Parents identified aspects of PCP communication which influenced their reactions and results disclosure experiences. Practice implications: Our findings suggest ways PCPs may improve communication of carrier results. PCPs should provide specific content messages and consider how their actions, characteristics, and setting can influence parental reactions.

Original languageEnglish (US)
Pages (from-to)378-385
Number of pages8
JournalPatient Education and Counseling
Volume90
Issue number3
DOIs
StatePublished - Mar 2013
Externally publishedYes

Bibliographical note

Funding Information:
The research is funded by NIH Grants K01-HL072530 and R01-HL086691 . The authors wish to acknowledge Hollie Beaudry, RN and Jill Paradowski, RN, MS for their contributions to data collection. We also acknowledge Stephanie Christopher, MA for database guidance and Nadine Desmarais for her transcription efforts. We would also like to thank the sickle cell and cystic fibrosis carrier families who participated in this study. The authors have no financial relationships relevant to this article or conflicts of interest to disclose.

Keywords

  • Cystic fibrosis carrier
  • Genetic carrier detection
  • Genetic counseling
  • Heterozygote
  • Newborn screening
  • Parental anxiety
  • Patient preferences
  • Patient-provider communication
  • Psychosocial outcomes
  • Results disclosure
  • Sickle cell trait

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