title: A Qualitative Study of Factors Influencing Decision-Making after Prenatal Diagnosis of down Syndrome.
abstract: Previous research has identified twenty-six factors that may affect pregnancy management decisions following prenatal diagnosis of DS; however, there is no consensus about the relative importance or effects of these factors. In order to better understand patient decision-making, we conducted expansive cognitive interviews with nine former patients who received a prenatal diagnosis of DS. Our results suggest that patients attached unique meanings to factors influencing decision-making regardless of the pregnancy outcome. Nineteen of the twenty-six factors previously studied and four novel factors (rationale for testing, information quality, pregnancy experience, and perception of parenting abilities and goals) were found to be important to decision-making. We argue that qualitative studies can help characterize the complexity of decision-making following prenatal diagnosis of DS.
authors.affiliation: Department of Writing Arts, Rowan University, 142 Bozorth Hall, Glassboro, NJ, 08028, USA. reeda@rowan.edu.
authors.forename: Amy R
authors.initials: AR
authors.lastname: Reed
authors.affiliation: Division of Medical Genetics, Duke University Medical Center, Durham, NC, USA.
authors.forename: Kathryn L
authors.initials: KL
authors.lastname: Berrier
mesh_terms: D000328:Adult; D003657:Decision Making; D004314:Down Syndrome / Q000175:diagnosis*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000523:psychology; D036301:Qualitative Research
keywords: Adoption; Decision-making; Down syndrome; Prenatal testing; Termination