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Qualitative Health Research
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"I'm not a saint": Burden Assessment as an Unrecognized Factor in Prenatal Decision Making

Judith L. M. McCoyd

Rutgers University, The State University of New Jersey, New Brunswick, New Jersey, USA

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.

Key Words: abortion • decision making • disability • genetics • medicine • reproductive • perinatal health • psychosocial issues

Qualitative Health Research, Vol. 18, No. 11, 1489-1500 (2008)
DOI: 10.1177/1049732308325642
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