“I'm not a saint”: Burden Assessment as an Unrecognized Factor in Prenatal Decision Making

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.