"What does this mean for our future?" uncertainty management in mothers' narratives about the diagnosis and birth of their child with Down syndrome.

Autor: Scruggs X; Department of Communication, University of Missouri, Columbia, Missouri, United States of America., Dier S; Department of Human Development and Family Science, University of Missouri, Columbia, Missouri, United States of America., Schlaupitz CA; Department of Psychological Science, University of California, Irvine, Irvine, California, United States of America., Karayianis KA; Department of Psychological Science, University of California, Irvine, Irvine, California, United States of America., Lukowski AF; Department of Psychological Science, University of California, Irvine, Irvine, California, United States of America., Bohanek JG; Department of Psychological Sciences, University of Missouri, Columbia, Missouri, United States of America.
Jazyk: angličtina
Zdroj: PloS one [PLoS One] 2024 Nov 06; Vol. 19 (11), pp. e0313195. Date of Electronic Publication: 2024 Nov 06 (Print Publication: 2024).
DOI: 10.1371/journal.pone.0313195
Abstrakt: Pregnancy and childbirth are uncertain experiences that become even more so when parents receive an unexpected medical diagnosis for their child. In the present study, we document sources of uncertainty and the tools used to manage uncertainty in 44 mothers' narratives about the birth and diagnosis of their child with Down syndrome (DS); we also explore variability in the sources of uncertainty and uncertainty management tools as a function of whether mothers received a prenatal or postnatal diagnosis of DS for their child. Across our sample, thematic analysis revealed four sources of uncertainty in mothers' narratives: navigating dissonance between parents and providers during diagnosis, managing disclosure of the diagnosis to others, anticipating child-centered challenges and adjusting developmental expectations, and anticipating family-centered challenges and adjusting familial expectations. Analyses also revealed four ways that uncertainty was managed: finding balance between parents and providers during diagnosis, reducing knowledge gaps by seeking information, pursuing support and building positive interpersonal relationships, and pursuing support and building positive relationships in DS communities. These findings, along with potential nuance based on whether mothers received a prenatal or postnatal diagnosis of DS for their child, have important implications for healthcare providers and medical professionals regarding how to best communicate DS diagnoses to families as a means of understanding and ultimately reducing the uncertainty they experience.
Competing Interests: The authors have declared that no competing interests exist.
(Copyright: © 2024 Scruggs et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
Databáze: MEDLINE
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