"I'm not a saint": Burden assessment as an unrecognized factor in prenatal decision making

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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.

Original languageEnglish (US)
Pages (from-to)1489-1500
Number of pages12
JournalQualitative Health Research
Volume18
Issue number11
DOIs
StatePublished - 2008

All Science Journal Classification (ASJC) codes

  • Public Health, Environmental and Occupational Health

Keywords

  • Abortion
  • Decision making
  • Disability
  • Genetics
  • Medicine
  • Perinatal health
  • Psychosocial issues
  • Reproductive

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