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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
19:15

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Psychosocial issues in newborn screening for cystic fibrosis

Evelyn P Parsons1, Donald M Bradley

  • 1School of Nursing and Midwifery Studies and Institute of Medical Genetics, University of Wales College of Medicine, Cardiff CF14 4XN, UK. parsonsep@cf.ac.uk

Paediatric Respiratory Reviews
|November 25, 2003
PubMed

Insights

Newborn screening for cystic fibrosis (CF) is debated due to uncertain long-term benefits. This review examines the psychosocial impacts on families, including parental attitudes and experiences with affected or carrier infants.

Area of Science:

  • Medical screening
  • Public health
  • Pediatrics

Background:

  • Newborn screening for cystic fibrosis (CF) is controversial.
  • Uncertainty exists regarding the long-term benefits of prophylactic interventions for CF.
  • Psychosocial implications are crucial when medical benefits exist and costs are manageable.

Purpose of the Study:

  • To review evidence on psychosocial issues associated with newborn screening for CF.
  • To explore parental attitudes towards CF screening.
  • To examine experiences of families with affected or carrier infants.

Main Methods:

  • Literature review of studies on newborn screening for CF.
  • Analysis of data concerning parental attitudes.
  • Examination of evidence from families with infants identified through screening.

Main Results:

  • Parental attitudes towards CF screening are varied.
  • Families with affected infants face unique psychosocial challenges.
  • Families with carrier infants also experience specific concerns.
  • Lessons for service delivery can be derived from these experiences.

Conclusions:

  • Psychosocial aspects are critical in the debate on newborn CF screening.
  • Understanding family experiences is key to improving screening programs.
  • Service delivery models must address the emotional and psychological needs of families.

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