Information flow after a positive newborn screening for cystic fibrosis.

  • JP D
  • Tluczek A
  • Dillard J
 et al. 
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Abstract

OBJECTIVES: To provide a model of the information processes instigated by a positive result on a newborn screening for cystic fibrosis and to analyze their implications for future research., METHOD: We reviewed research conducted at Wisconsin and elsewhere., RESULTS: We identified 6 distinct phases of information flow., CONCLUSION: Although continued attention to genetic counseling is clearly warranted, research on information flow after newborn screening should: 1) look beyond genetic counseling to include a variety of information sources including family, friends, and the Internet; 2) appreciate that families vary in their willingness to acquire cystic fibrosis-related information; and 3) should seek to better understand how this information moves through social networks.

Author-supplied keywords

  • *Communication
  • *Cystic Fibrosis/di [Diagnosis]
  • *Genetic Counseling
  • *Neonatal Screening/px [Psychology]
  • *Parents/ed [Education]
  • *Professional-Family Relations
  • Adult
  • Anxiety -- Psychosocial Factors
  • Anxiety/px [Psychology]
  • Chlorides -- Analysis
  • Chlorides/an [Analysis]
  • Communication
  • Communications Media
  • Cystic Fibrosis
  • Cystic Fibrosis -- Diagnosis
  • Cystic Fibrosis/ge [Genetics]
  • Female
  • Friends
  • Friendship
  • Genetic Counseling -- Methods
  • Genetic Counseling -- Psychosocial Factors
  • Genetic Counseling/mt [Methods]
  • Genetic Counseling/px [Psychology]
  • Human
  • Humans
  • Infant
  • Information Services
  • Internet
  • Male
  • Mass Media
  • Models
  • Needs Assessment
  • Neonatal Assessment -- Psychosocial Factors
  • Newborn
  • Parents -- Education
  • Parents -- Psychosocial Factors
  • Parents/px [Psychology]
  • Professional-Family Relations
  • Psychological
  • Psychological -- Psychosocial Factors
  • Psychological/px [Psychology]
  • Stress
  • Sweat
  • Sweat/ch [Chemistry]
  • Time Factors
  • Wisconsin

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Authors

  • Dillard JP

  • Audrey Tluczek

  • James Price Dillard

  • Audrey Tluczek

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