Parental adaptation to termination of pregnancy for fetal anomalies

Abstract

The expanding use of prenatal diagnosis and improvements in prenatal screening lead to an increasing number of fetal abnormalities diagnosed in early pregnancy. While the majority of parents who have opted for prenatal diagnosis will be reassured that their child does not have the anomaly the test was aimed at, some parents will be confronted with the diagnosis of fetal anomaly. Therapeutic options are limited and these parents will have to decide whether they will continue the pregnancy and have a severely handicapped child or a child that will die soon after birth, or whether they will terminate this otherwise desired pregnancy. Parents who opt for a termination of the pregnancy (TOP) decide on their own loss of pregnancy. In the Netherlands this complex and painful decision is currently made 500 to 550 times a year. We conducted a postal questionnaire study, in 347 (196 f and 151 m) parents who had undergone a TOP 2 to 7 years before and in 386 parents (217 f and 169 m) who were asked for participation at time of hospitalization for termination of the pregnancy and who filled out questionnaires 4, 8 and 15 months after termination. Aims of the study: 1. to get insight into the decision-making process and in the short and long term psychological consequences. 2. to identify factors influencing psychological morbidity. 3. to compare the reactions of women and men and assess the interaction within the couples. 4. to formulate guidelines, which may minimize the emotional impact associated with termination of a pregnancy. Conclusions: - Parents experience termination of pregnancy for fetal anomaly more as a traumatic than a loss event. Psychological distress following TOP is initially higher in women than in their partners, but long-term outcome does not differ greatly. Parents with problematic adjustment in the first period after TOP have a higher risk of psychological morbidity in the long term. Although most parents adapt well to TOP a significant number (in women about 20%) keep long-term posttraumatic stress complaints. - Risk factors for long-term psychological morbidity are: inadequate partner support (mainly for women), low level of self efficacy, high level of doubt in the decision period, perceived pressure at the decisional process, more advanced gestational age, having a religion, a fetal anomaly presumably compatible with life, and a low level of education. - Down’s syndrome, being the most frequent cause of TOP, did not negatively affect parental outcome. - For most of the parents, the termination did not affect their future reproductive intentions, and regret about the decision was rare. This was also reflected by a positive attitude towards a next pregnancy and prenatal testing during such a pregnancy. Recommendations: Parents need to be informed about the risk of serious psychological distress in the first period after TOP, but also about the fact that most people adapt well on the long-term. The existence of patient self-help groups must be pointed out to them. The partner’s role in the adjustment is very important and therefore both partners should be equally involved in counselling. Clinicians should give extensive information as to the severity of the fetal anomaly. Parents should be offered psychological help in case of a high level of doubt in the decisional period and in case of serious distress in the first period after TOP.