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Uncertainty management following a positive newborn screening for cystic fibrosis
James Price Dillard1, Christine L Carson
1Center for Communication Research, University of Wisconsin-Madison, Madison, Wisconsin, USA. jdillard@psu.edu
Insights
Newborn screening for cystic fibrosis (CF) can cause anxiety. Healthcare providers and families actively manage and negotiate uncertainty, rather than simply reduce it, during these interactions.
Area of Science:
- Genomics and Genetic Screening
- Psychosocial Health
- Communication in Healthcare
Background:
- Advances in human genome understanding drive increased newborn screening.
- Newborn screening, while beneficial, can lead to psychosocial distress, including anxiety and uncertainty for families.
- Positive newborn screening results for conditions like cystic fibrosis (CF) necessitate effective communication strategies.
Purpose of the Study:
- To examine how healthcare providers and families manage uncertainty following a positive newborn screening test for cystic fibrosis.
- To analyze the communication dynamics during these sensitive interactions.
- To contribute to theories of uncertainty management in healthcare settings.
Main Methods:
- Analysis of videotaped interactions between healthcare providers and families (N=17) of infants with positive cystic fibrosis screening results.
- Qualitative examination of communication behaviors and strategies used to manage uncertainty.
Main Results:
- Healthcare providers aimed to reduce uncertainty, but interactions revealed complex behaviors.
- Both providers and families actively engaged in managing and negotiating uncertainty, not solely reducing it.
- Observed communication patterns highlight a dual process of managing and negotiating uncertainty.
Conclusions:
- Uncertainty management in pediatric screening is a dynamic, negotiated process.
- Communication strategies should acknowledge and address the negotiation of uncertainty, not just its reduction.
- Findings have implications for training healthcare providers in communicating complex genetic information and managing psychosocial outcomes.
Abstract:
As advances are made in understanding the human genome, newborn screening for a variety of different diseases becomes more prevalent. Although this screening can provide a number of benefits, it also may be associated with various negative psychosocial consequences, including heightened uncertainty and anxiety about the child's health. Relying on videotaped interactions between health care providers and families whose child received a positive newborn screening test for cystic fibrosis (CF; N = 17), in this article we report on how the respective parties manage uncertainty. Although the goal of the providers appears to be one of reducing uncertainty, all parties to the interaction engage in behaviors that both manage and negotiate as opposed to just reduce uncertainty. Implications for theorizing about uncertainty management are discussed.
