Uncertainty Management Following a Positive Newborn Screening for Cystic Fibrosis

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.

Acknowledgments

Preparation of this manuscript was supported by the National Institute on Diabetes, Digestive, and Kidney Diseases and by the National Institute for Human Genome Research (R01 DK34108-16).

Notes

¹Even when two copies of the gene are found, the child sometimes receives further testing. In these cases additional testing may be done (a) to help the family psychologically accept the findings, or (b) to confirm the diagnosis and rule out the possibility of lab errors during the screening test.

²There are a number of writers who address the concept of uncertainty, each of whom have something unique to say (e.g., Babrow, 2001; Brashers, 2001; Goldsmith, 2001; Penrod, 2001). Our focus is more on their points of commonality rather than difference. Accordingly, our use of the phrase “uncertainty management” is intended to reference a body of literature rather than a particular author.

³The data for race and age are from only 16 of the 17 tapes since one of the tapes has only audio (no video), so estimating race and age was impossible.

⁴In two cases, a member of the medical staff forgot to deactivate the tape machine upon leaving the room. The resulting record of the family interaction was not examined as part of this or any other analysis.

⁵One tape, which consisted of only the results section of the in-clinic visit, is not included in these calculations. That tape was 849 words in length.