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Updated: Jun 29, 2026

Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
"I'm not a saint": burden assessment as an unrecognized factor in prenatal decision making
1Rutgers University, The State University of New Jersey, New Brunswick, New Jersey, USA.
Abstract:
Prenatal testing is widely utilized, yet few studies have explored decision-making processes about diagnosis from the pregnant woman's standpoint. This qualitative, exploratory study reveals a factor not accounted for in prior research geared toward associations between demographic categories and decisions. The 30 women in this study demonstrated a three-part decisional trajectory that included an effort to collect information about the challenges a potential child with their particular diagnosis might experience. They then assessed their social context, familial supports, and resilience as a couple. A final yet crucial step was an assessment of the woman's own capacity to provide this level of care within her unique context. Few genetics teams have a member with biopsychosocial expertise and time who can help the woman/couple reflect on the situated context of the decision and its impact. Better care strategies to support women and couples through this experience are warranted.
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