The health-care experiences of families given the prenatal diagnosis of trisomy 18

Objective: The objective of this study was to examine parent-reported experiences in the health care system after receiving the prenatal diagnosis of trisomy 18 and to identify factors that contribute to satisfaction with care. Study Design: Nineteen families who received the diagnosis between 2002 and 2005 were given semistructured telephone interviews. Of the 19 families, 11 continued the pregnancy while the remaining 8 chose induced abortion. Classical content analysis was utilized to identify themes among subject responses. Result: We identified several specific aspects of care as key in either being highly satisfied or dissatisfied: expressions of empathy from provider, continuity of care, communication, valuing the fetus and participation in medical decision-making. Conclusions: Aspects of care that were identified as reasons for dissatisfaction are potentially modifiable by training, education or team-based approaches. Further studies are necessary to determine how we can improve the quality of services during prenatal diagnosis.