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Women's Experiences of Fetal Screening for Down's Syndrome by Means of an Early Ultrasound Examination
Sophiahemmet University.ORCID iD: 0000-0003-2626-2335
2005 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet , 2005. , 56 p.
Keyword [en]
Fetal ultrasound screening, Nuchal translucency, Down's syndrome, Worry, Depressive symptoms, False positive results, Women's reactions, Risk information
National Category
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-135ISBN: 91-7140-228-4 (print)OAI: oai:DiVA.org:shh-135DiVA: diva2:314368
Public defence
2005-04-15, 09:00 (English)
Opponent
Supervisors
Available from: 2010-04-27 Created: 2010-03-12 Last updated: 2016-06-09Bibliographically approved
List of papers
1. Women's worries during pregnancy: testing the Cambridge Worry Scale on 200 Swedish women
Open this publication in new window or tab >>Women's worries during pregnancy: testing the Cambridge Worry Scale on 200 Swedish women
2003 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 17, no 2, 148-52 p.Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Nursing Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:shh:diva-40 (URN)12753515 (PubMedID)
Available from: 2010-03-03 Created: 2010-02-22 Last updated: 2014-10-21Bibliographically approved
2. Does fetal screening affect women's worries about the health of their baby?: a randomized controlled trial of ultrasound screening for Down's syndrome versus routine ultrasound screening
Open this publication in new window or tab >>Does fetal screening affect women's worries about the health of their baby?: a randomized controlled trial of ultrasound screening for Down's syndrome versus routine ultrasound screening
2004 (English)In: Acta Obstetricia et Gynecologica Scandinavica, ISSN 0001-6349, E-ISSN 1600-0412, Vol. 83, no 7, 634-40 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Screening for fetal abnormality may increase women's anxiety as attention is directed at the possibility of something being wrong with the baby. The aim of this study was to evaluate the effect of ultrasound screening for Down's syndrome on women's anxiety in mid-pregnancy and 2 months after delivery. METHOD: Two thousand and twenty-six women were randomly allocated to an ultrasound examination at 12-14 gestational weeks (gws) including risk assessment for Down's syndrome or to a routine scan at 15-20 gws. Questionnaires including the State-Trait Anxiety Inventory (STAI), the Cambridge Worry Scale (CWS), and the Edinburgh Postnatal Depression Scale (EPDS) were filled in at baseline in early pregnancy, at 24 gws and 2 months after delivery. RESULTS: No statistically significant differences were found between the trial groups regarding women's worries about the health of the baby, general anxiety and depressive symptoms during pregnancy or 2 months after delivery. Women's worries about something being wrong with the baby in the early ultrasound group and routine group, respectively, decreased from baseline (39.1% versus 36.0%) to mid-pregnancy (29.2% versus 27.8%), and finally to 2 months after delivery (5.2% versus 6.6%). CONCLUSION: Fetal screening for Down's syndrome by an early ultrasound scan did not cause more anxiety or concerns about the health of the baby in mid-pregnancy or 2 months after birth than in women who had a routine scan.

National Category
Obstetrics, Gynecology and Reproductive Medicine Nursing
Identifiers
urn:nbn:se:shh:diva-39 (URN)10.1111/j.0001-6349.2004.00462.x (DOI)15225187 (PubMedID)
Available from: 2010-03-04 Created: 2010-02-22 Last updated: 2014-10-21Bibliographically approved
3. Pregnant women's responses to information about an increased risk of carrying a baby with Down syndrome
Open this publication in new window or tab >>Pregnant women's responses to information about an increased risk of carrying a baby with Down syndrome
Show others...
2006 (English)In: Birth, ISSN 0730-7659, E-ISSN 1523-536X, Vol. 33, no 1, 64-73 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Fetal screening for Down syndrome by an ultrasound examination, including measurement of fetal nuchal translucency, at 12 to14 weeks' gestation is presently being evaluated in a Swedish randomized controlled trial. Women at high risk were offered an amniocentesis to obtain a definite diagnosis. The aim of this study was to explore women's reactions and responses to information about being at high risk after the scan, with a special focus on reactions to a false positive test. METHOD: Interviews were conducted with 24 women within 1 week after the scan, in midpregnancy, and 2 months after the birth. The interviews were analyzed qualitatively. Down syndrome was confirmed in 4 women, who chose to terminate the pregnancy. The remaining 20 women had a false positive test. RESULTS: For the majority, the risk information caused strong reactions of anxiety and worries about the future. A typical way for women to cope was to "withhold" the pregnancy, to take a "timeout," and try to live as if they were not pregnant any longer. Some weeks later, when the women received normal results from the chromosome analysis, they resumed being pregnant. Six women ages more than 35 years who had a risk score lower than their age-related risk did not express similarly strong reactions. Two months after the birth of a healthy baby, most stated they would undergo the same procedure in a subsequent pregnancy. One woman still suffered from the experience when interviewed at 2 months after the birth, and another said she regretted participating in the fetal screening program. CONCLUSIONS: A false positive test of fetal screening for Down syndrome by ultrasound examination may cause strong reactions of anxiety and even rejection of the pregnancy. The prevalence of such reactions and possible long-term effects need further investigation.

National Category
Obstetrics, Gynecology and Reproductive Medicine Nursing
Identifiers
urn:nbn:se:shh:diva-38 (URN)10.1111/j.0730-7659.2006.00075.x (DOI)16499533 (PubMedID)
Available from: 2010-03-04 Created: 2010-02-22 Last updated: 2014-10-21Bibliographically approved
4. Perception of risk in relation to ultrasound screening for Down's syndrome during pregnancy
Open this publication in new window or tab >>Perception of risk in relation to ultrasound screening for Down's syndrome during pregnancy
2009 (English)In: Midwifery, ISSN 1532-3099, Vol. 25, no 3, 264-76 p.Article in journal (Refereed) Published
Abstract [en]

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.

National Category
Obstetrics, Gynecology and Reproductive Medicine Nursing
Identifiers
urn:nbn:se:shh:diva-37 (URN)10.1016/j.midw.2007.04.007 (DOI)17920172 (PubMedID)
Available from: 2010-03-04 Created: 2010-02-22 Last updated: 2014-10-21Bibliographically approved

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