Keywords

birth defect, cleft lip/palate, dilemma, psychosocial consequences, phenomenology

 

Authors

  1. Hsieh, Yueh-Tzu

ABSTRACT

Background: Prenatal detection of cleft lip and/or palate (CL/P) leads to high rates of induced termination of pregnancy. There has been little research in Taiwan done on the psychosocial factors affecting those who decide to continue their CL/P pregnancy.

 

Purpose: This study identified the principal psychosocial factors that affect expecting mothers who chose to continue their CL/P pregnancy to term.

 

Methods: Purposive sampling recruited expecting mothers with CL/P-diagnosed fetuses. Recruiting took place between May 2000 and March 2002 at a tertiary referral hospital in Taipei, Taiwan. Those who had decided to continue their pregnancy to term were asked to participate. Researchers obtained oral informed consent to be interviewed during the week following CL/P diagnosis. Interviews for each participant were completed within a 2-week period. All information was given to the interviewees in written and verbal forms before providing their written informed consent to participate.

 

Results: The five major themes central to participant experiences included (1) loss of self-value as a mother, (2) blaming the mother, (3) indecision about whether to continue the pregnancy, (4) anxiety triggered by insufficient information, and (5) burden of care and concerns about potential disadvantaged status.

 

Conclusions: Significant psychological distress was identified among participants following their fetus' CL/P diagnosis. It was encouraging to learn that all participants told researchers in postpartum interviews that they did not regret the decision to take their child to term.