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

J Perinatol. 2008 Jan;28(1):12-9. doi: 10.1038/sj.jp.7211860. Epub 2007 Oct 25.

Abstract

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.

MeSH terms

  • Abortion, Induced
  • Decision Making
  • Female
  • Follow-Up Studies
  • Genetic Counseling*
  • Health Services / standards*
  • Health Services / statistics & numerical data
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Patient Satisfaction*
  • Pregnancy
  • Prenatal Diagnosis*
  • Professional-Family Relations
  • Professional-Patient Relations
  • Quality of Health Care
  • Trisomy / diagnosis*