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

Quality of consumer-oriented websites containing information about the second trimester ultrasound examination during pregnancy

BACKGROUND: Providing information about prenatal tests is a clinical challenge and the public frequently accesses the Web to read pregnancy-related information. The overarching aim of this study was to investigate the quality of consumer-oriented websites addressing obstetric ultrasound examination in the second trimester of pregnancy. METHODS: Swedish websites were identified with Google, using 20 search strings and screening 400 hits (n = 71 included websites). Reliability and information about the examination were assessed with the DISCERN instrument, completeness was assessed according to national guidelines, and readability analyzed with the Readability Index. Popularity was determined with the ALEXA tool and search rank was determined according to Google hit lists. RESULTS: The mean total DISCERN score was 29.7/80 (SD 11.4), with > 50% having low quality for 15 of the 16 questions. The mean completeness score was 6.8/24 (SD 4.5). The Readability Index ranged between 22 and 63, with a mean of 42.7 (SD 6.8), indicating difficult readability. Weak and non-significant correlations were observed between ALEXA/search rank and the investigated quality variables, except for search rank and reliability. CONCLUSIONS: The quality of consumer-oriented websites addressing the second trimester ultrasound examination is low. Health professionals need to discuss this with expectant parents considering undergoing the examination. There is a need for efforts that aim to improve the poor quality of online sources in the field of prenatal examinations

Readability of web-based sources about induced abortion : a cross-sectional study

BACKGROUND: High-quality information is essential if clients who request an abortion are to reach informed decisions and feel prepared for the procedure, but little is known concerning the readability of web-based sources containing such material. The aim was to investigate the readability of web-based information about induced abortion. METHODS: The search engine Google was used to identify web pages about induced abortion, written in the English language. A total of 240 hits were screened and 236 web pages fulfilled the inclusion criteria. After correcting for duplicate hits, 185 web pages were included. The readability of the text-based content of each web page was determined with Flesch Kincaid Grade Level, Gunning Fog Index, Coleman-Liau Index, Simple Measure of Gobbledygook, and Flesch Reading Ease. Data were analyzed with descriptive statistics, Pearson's correlation coefficient and Kruskal-Wallis with Dunn's test as post hoc analysis. RESULTS: Across all grade level measures, a small minority of the web pages had a readability corresponding to elementary school (n < 3, 1%), while the majority had readability corresponding to senior high school or above (n > 153, 65%). The means of the grade level measures ranged between 10.5 and 13.1, and the mean Flesch Reading Ease score was 45.3 (SD 13.6). Only weak correlations (rho < 0.2) were found between the readability measures and search rank in the hit lists. Consistently, web pages affiliated with health care had the least difficult readability and those affiliated with scientific sources had the most difficult readability. CONCLUSIONS: Overall, web-based information about induced abortions has difficult readability. Incentives are needed to improve the readability of these texts and ensure that clients encounter understandable information so that they may reach informed decisions and feel adequately prepared when requesting an abortion

Readability, understandability and language accessibility of Swedish websites about the coronavirus disease 2019 : a cross-sectional study

Background The COVID-19 pandemic has caused significant morbidity and mortality. To mitigate its spread, members in the general population were prompted to apply significant behavioral changes. This required an effective dissemination of understandable information accessible for people with a wide range of literacy backgrounds. The aim of this study was to investigate the readability, understandability and language accessibility of Swedish consumer-oriented websites containing information about COVID-19. Methods Websites were identified through systematic searches in Google.se (n = 76), and were collected in May 2020 when the pandemic spread started in Sweden. Readability and understandability were assessed with the Readability Index, the Ensuring Quality Information for Patients (EQIP) tool, and the Patient Education Materials Assessment Tool Understandability subscale (PEMAT-PU). Results The median total sample score for Readability Index was 42.0, with the majority of scores being classified as moderate (n = 30, 39%) or difficult (n = 43, 57%). Median total sample scores were for EQIP 54.0% (IQR = 17.0, Range = 8-75) and for PEMAT-PU 60.0% (IQR = 14.75, Range = 12-87). The majority of the websites did not have any texts or links containing information in an alternative language (n = 58, 76%). Conclusions Swedish websites contained information of difficult readability and understandability at the beginning of the coronavirus disease 2019 pandemic, with few providing information available in alternative languages. It is possible that these deficits contributed to the spread and impact of the virus. There is a need for studies investigating methods aiming to enhance the readability, understandability and language accessibility of web-based information at the beginning of an epidemic or pandemic

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

Waterbirth in Sweden - a comparative study

INTRODUCTION: The literature describes advantages for mothers giving birth in water, but waterbirth is controversial in Sweden and has not been offered at hospitals until recently. This study aimed to describe and compare the characteristics and outcome of waterbirths with spontaneous vaginal births at the same clinics. MATERIAL AND METHODS: A retrospective cohort study was conducted on all waterbirths at two maternity units in Sweden from March 2014 to November 2015 (n=306), and a consecutively selected comparison group of 306 women having conventional spontaneous vaginal births. Logistic regression was used to analyze the primary outcome; second-degree perineal tears. RESULTS: Women giving birth in water had a lower risk of second-degree perineal tears (adj. OR 0.6 [95% CI 0.4-0.9]). Their labor was shorter (6:03 hrs. vs 7:52 hrs.) and there were significantly less interventions than in the comparison group; amniotomy (13.7% vs. 35.3%), internal cardiotocography (11.1% vs.56.8%), and augmentation with oxytocin (5.2% vs.31.3%). There were no differences in Apgar scores or admissions to neonatal intensive care unit. The experience of childbirth, measured with a numeric rating scale, was higher in the waterbirth group indicating a more positive birth experience. Three newborns born in water had an umbilical cord avulsion. CONCLUSIONS: In this low-risk population, waterbirth is associated with positive effects on perineal tears, the frequency of interventions, the duration of labor and women's birth experience. Midwives handling waterbirth should be aware of the risk of umbilical cord avulsion. This article is protected by copyright. All rights reserved

Quality of web-based information about the coronavirus disease 2019 : A rapid systematic review of infodemiology studies published during the first year of the pandemic

BACKGROUND: Following the outbreak of the coronavirus disease 2019, adequate public information was of outmost importance. The public used the Web extensively to read information about the pandemic, which placed significant responsibility in, for many, an unfamiliar situation as the disease spread across the globe. The aim of this review was to synthesize the quality of web-based information concerning the coronavirus disease 2019 published during the first year of the pandemic. MATERIALS AND METHODS: A rapid systematic review was undertaken by searching five electronic databases (CINAHL, Communication & Mass Media Complete, PsycINFO, PubMed, Scopus). Empirical infodemiology reports assessing quality of information were included (n = 22). Methodological quality and risk of bias was appraised with tools modified from previous research, while quality assessment scores were synthesized with descriptive statistics. Topics illustrating comprehensiveness were categorized with content analysis. RESULTS: The included reports assessed text-based content (n = 13) and videos (n = 9). Most were rated good overall methodological quality (n = 17). In total, the reports evaluated 2,654 websites or videos and utilized 46 assessors. The majority of the reports concluded that websites and videos had poor quality (n = 20). Collectively, readability levels exceeded the recommended sixth grade level. There were large variations in ranges of the reported mean or median quality scores, with 13 of 15 total sample scores being classified as poor or moderate quality. Four studies reported that ≥ 28% of websites contained inaccurate statements. There were large variations in prevalence for the six categories illustrating comprehensiveness. CONCLUSION: The results highlight quality deficits of web-based information about COVID-19 published during the first year of the pandemic, suggesting a high probability that this hindered the general population from being adequately informed when faced with the new and unfamiliar situation. Future research should address the highlighted quality deficits, identify methods that aid citizens in their information retrieval, and identify interventions that aim to improve the quality of information in the online landscape