Women´s experiences of fetal screening for Down's syndrome by means of an early ultrasound examination

The general aim of this thesis was to explore women's reactions to and experiences of fetal screening for Down's syndrome PS) by means of an ultrasound examination, including measurement of fetal nuchal translucency (NT). The effect of this screening on maternal worry about the baby's health was investigated, as well as reactions to a false positive test and interpretation of information about riskAlso, an instrument measuring worry during pregnancy, the Cambridge Worry Scale, was translated into Swedish and tested on a sample of pregnant women. A sub-sample of 2026 women was drawn from a larger randomised controlled trial including 39,572 women, which investigated medical outcomes of the new fetal screening policy. Of these women, 1030 were randomly allocated to the intervention group, and 996 to routine care. No statistically significant differences were found between the two groups regarding major worry about something being wrong with the baby, general anxiety and depressive symptoms m midpregnancy and two months postpartum. Twenty-four women who had received information about an increased risk according to NT were interviewed during pregnancy and after birth. Twenty of these women had false positive tests, and for 16 the risk was higher than expected considering their age. These women expressed major worry, and many said they chose to reject their pregnancy, to take "time out", while waiting for the results of fetal karyotyping. Two months after the birth, most of these women seemed to have overcome the stressful situation. In the intervention group of the above trial 796 women had a risk score for DS recorded in a clinical database. Of these women 620 said they had received information about the risk score, and 64 percent stated the figure almost correctly. The actual risk was associated with women's perception of the risk. Worry about the baby's health and depressive symptoms did not differ statistically between women who were at high risk (1:250 or higher) and at low risk. However, women who perceived that the risk was high were more worried about the baby's health and also seemed to have more depressive symptoms in mid-pregnancy compared with those who perceived the risk to be low. No differences were observed at two months after birth. The translated version of the Cambridge Worry Scale was tested on 200 Swedish pregnant women in Stockholm. The three main sources of worry were about the baby's health, giving birth and miscarriage. The internal- consistency reliability was 0.81 (Cronbach's alpha). Three items were added to the original scale to capture women's worry about the maternity services. In conclusion, the intervention with an early ultrasound examination including risk assessment for DS by measuring the NT did not affect maternal worry about the baby's health, general anxiety or depressive symptoms 'm mid-pregnancy or two months after birth. However, a false positive test could cause strong reactions of anxiety and rejection of the pregnancy for some weeks. Many had problems to recall and interpret a given risk score. An actual high risk score was not associated with major worry about the baby's health or depressive symptoms, whereas a woman's perception of being at high risk had such an association. The Swedish version of the Cambridge Worry Scale was considered to be useful and well suited for its purpose

Development of an observational instrument to assess gastro-esophageal reflux disease in premature infants

Abstract: Background: Premature infants are at increased risk of developing Gastroesophageal Reflux Disease (GERD), which for these children is associated with a number of severe symptoms. There is great need for effective instruments and clear symptom criteria to assess the presence and degree of severity of GERD. Aim: To develop and pilot test an observation instrument for early detection of symptoms of GERD in premature infants. Method: A combination of three research methods was used – systematic literature review, observation instrument development and a pilot test. Results: The systematic review identified specific symptoms of GERD. The development of the observational instrument started with the establishment of concordance between the criteria of symptoms according to the literature review and to NIDCAP, “Newborn Individualized Developmental Care and Assessment Program”. In the pilot test the criteria of symptoms were revised by comparing the result and the criteria between infants that clinically were estimated to have had a reflux problem and the ones who did not. Conclusion: An observation instrument was developed. The clinical evaluation by a pilot test showed that the instrument could be useful to record significant symptoms and combinations of symptoms that may occur in premature infants assessed as having reflux problems

Perception of risk in relation to ultrasound screening for Down's syndrome during pregnancy

OBJECTIVE: to explore how information about being at risk of carrying a fetus with Down's syndrome was understood, and whether the actual risk and the woman's perception of risk was associated with worry or depressive symptoms during and after pregnancy. DESIGN AND SETTING: observational study. The sample was drawn from the intervention group of a Swedish randomised controlled trial of ultrasound screening for Down's syndrome by nuchal translucency measurement. MEASUREMENTS: data were collected by three questionnaires. Questions were asked about recall of the risk score and perception of risk. The Cambridge Worry Scale and the Edinburgh Postnatal Depression Scale measured worry and depressive symptoms, respectively, on all three occasions. FINDINGS: of the 796 women who provided data for this study, one in five was unaware that the risk score was noted in her case record. In total, 620 women stated that they had received a risk score, but only 64% of them recalled the figure exactly or approximately. The actual risk was associated with the perceived risk, but of the 31 women who perceived the risk to be high, only 14 were actually at high risk. A high-risk score was not associated with worry or depressive symptoms in mid-pregnancy, in contrast to a woman's own perception of being at high risk. Two months postpartum, no associations were found between maternal emotional well-being and actual or perceived risk. CONCLUSIONS: information about fetal risk is complicated and women's perception of risk does not always reflect the actual risk, at least not when presented as a numerical risk score. The possibility that the information may cause unnecessary emotional problems cannot be excluded. IMPLICATIONS FOR PRACTICE: caregivers should ascertain that information about fetal risk is interpreted correctly by pregnant women.</p

Does an information film about prenatal testing in early pregnancy affect women’s anxiety and worries?

Abstract Objective: To explore if an information film about prenatal examinations affects pregnant women's worry and anxiety. Methods: Randomized controlled study. The intervention was an information film about prenatal examinations. Data was collected in gestational week 26 by a questionnaire including the STAI (State-Trait Anxiety Inventory) instrument and further questions about worry. A total of 184 women in the intervention group and 206 in the control group filled in the questionnaire. Results: There were no statistically significant differences between the groups neither in state nor trait anxiety. Regarding worry about the possibility of something being wrong with the baby and worry about giving birth, there were no statistically significant differences between the groups. The women stated that to see the film increased their worry rather than decreased it. Conclusion: An informational film as additional information to complement written and verbal information about prenatal testing does not appear to increase women's anxiety and worries. However, the informational film may cause worry at the time of viewing which should be taken into consideration.</p

Women's worries during pregnancy : testing the Cambridge Worry Scale on 200 Swedish women

The Cambridge Worry Scale (CWS) is an instrument including 16 items measuring women's major worries during pregnancy. The aim of the study was to test the scale, translated into Swedish, on pregnant women in Stockholm. We also wanted to explore whether these women were worried about any item not included in the scale. An additional aim was to study possible variation in women's worries related to gestational week. Two hundred women were recruited. The average age was 31 years and 56% were primiparas. Gestational age ranged from 8 to 42 weeks, with a median of 28 weeks. The reliability of the scale was satisfactory (Cronbach's alpha coefficient 0.81). The major worries were about the baby's health, giving birth and miscarriage. These items, all related to pregnancy outcomes, were followed by worries about financial matters. An additional concern not included in the scale was about the maternity services in Stockholm, i.e. that the hospital would be overbooked, the staff being too busy or the medical safety not being guaranteed. Few women worried about their relationship with their partner or if he would be present at birth. Some of the items showed a pattern with a period of less worry in midpregnancy.</p

Implementation of combined ultrasound and biochemistry for risk evaluation of chromosomal abnormalities during the first trimester in Sweden

OBJECTIVE: To investigate how the first trimester risk evaluation for Down syndrome is offered and performed. SETTING: Sweden. SAMPLE: All 52 known units working with obstetric ultrasound. METHODS: Study-specific questionnaire and descriptive statistical analyses. MAIN OUTCOME MEASURES: Routines for offering combined ultrasound and biochemistry (CUB), questions about information, questions about tests and analysis used for diagnosis. RESULTS: CUB was performed in 28 600 (26%) of the expected 110 000 pregnancies in Sweden during 2011. Of all pregnant women, 15% were living in a county not offering CUB (only invasive prenatal diagnosis); 44% regardless of age; 15% to women ≥33 years; 24% to women ≥35 years; and 2% to women ≥38 years old. Amniocentesis was the most common method offered when the risk was estimated as high. Of the 47 units that replied, 29 (61.7%) offered only amniocentesis. On the questions about information, 40 (95.2%) stated that they gave verbal information. In addition to verbal information, 17 (40.5%) gave written information. Forty-one of the units (71.9%) stated that the CUB is offered to non-Swedish-speaking women. CONCLUSION: Without consistent national guidelines, the prenatal diagnostic CUB method is offered in an inequitable manner to pregnant women in Sweden. More than half of all pregnant women live in a county where CUB is not offered or is only offered based on age. The results demonstrate the importance of national consistency before the introduction of new prenatal tests, to enhance equal care for all pregnant women