Mirjam P. Fransen

Ethnic differences in informed decision-making about prenatal screening for Down's syndrome

Background The aim of this study was to assess ethnic variations in informed decision-making about prenatal screening for Downs syndrome and to examine the contribution of background and decision-making variables. Methods Pregnant women of Dutch, Turkish and Surinamese origin were recruited between 2006 and 2008 from community midwifery or obstetrical practices in The Netherlands. Each woman was personally interviewed 3 weeks (mean) after booking for prenatal care. Knowledge, attitude and participation in prenatal screening were assessed following the ‘Multidimensional Measure of Informed Choice’ that has been developed and applied in the UK. Results In total, 71% of the Dutch women were classified as informed decision-makers, compared with 5% of the Turkish and 26% of the Surinamese women. Differences between Surinamese and Dutch women could largely be attributed to differences in educational level and age. Differences between Dutch and Turkish women could mainly be attributed to differences in language skills and gender emancipation. Conclusion Women from ethnic minority groups less often made an informed decision whether or not to participate in prenatal screening. Interventions to decrease these ethnic differences should first of all be aimed at overcoming language barriers and increasing comprehension among women with a low education level. To further develop diversity-sensitive strategies for counselling, it should be investigated how women from different ethnic backgrounds value informed decision-making in prenatal screening, what decision-relevant knowledge they need and what they take into account when considering participation in prenatal screening.

Ethnic differences in participation in prenatal screening for Down syndrome: a register-based study.

To assess ethnic differences in participation in prenatal screening for Down syndrome in the Netherlands.

Information about prenatal screening for Down syndrome Ethnic differences in knowledge.

OBJECTIVE To evaluate the provision of information about prenatal screening for Down syndrome to women of Dutch, Turkish and Surinamese origins, and to examine the effects of this provision on ethnic differences in knowledge about Down syndrome and prenatal screening. METHODS The study population consisted of 105 Dutch, 100 Turkish and 65 Surinamese pregnant women attending midwifery or obstetrical practices in The Netherlands. Each woman was personally interviewed for 3 weeks (mean) after booking for prenatal care. RESULTS Most women reported to have received oral and/or written information about prenatal screening by their midwife or obstetrician at booking for prenatal care. Turkish and Surinamese women less often read the information than Dutch women, more often reported difficulties in understanding the information, and had less knowledge about Down syndrome, prenatal screening and amniocentesis. Language skills and educational level contributed most to the explanation of these ethnic variations. CONCLUSION Although most Dutch, Turkish and Surinamese women reported to have received information from their midwife or obstetrician, ethnic differences in knowledge about Down syndrome and prenatal screening are substantial. PRACTICE IMPLICATIONS Interventions to improve the provision of information to women from ethnic minority groups should especially be aimed at overcoming language barriers, and targeting information to the womens abilities to comprehend the information about prenatal screening for Down syndrome.

Ethnic and socio-economic differences in uptake of prenatal diagnostic tests for Down's syndrome

OBJECTIVE The objective of this study was to assess ethnic and socio-economic differences in the uptake of maternal age-based prenatal diagnostic testing for Downs syndrome by amniocentesis or chorionic villus sampling. STUDY DESIGN The study population consisted of 12,340 women aged 36 years or over, who lived in a geographically defined region in the Southwest of The Netherlands and who gave birth to a live born infant in the period 2000-2004. Data were obtained from the Department of Clinical Genetics Erasmus MC and Statistics Netherlands. Logistic regression analyses were done to assess ethnic and socio-economic differences in uptake. RESULTS The overall uptake of prenatal diagnostic tests was 28.5%. Women of Turkish and Caribbean origin participated in prenatal diagnostic tests equally or more often than Dutch women. Women of North-African origin and women from low socio-economic background had a lower uptake than others. Ethnic differences in uptake could not be attributed to differences in socio-economic background. CONCLUSIONS Uptake of prenatal diagnostic tests for Downs syndrome in The Netherlands was low and varied among ethnic and socio-economic groups of advanced maternal age. The finding that women of Turkish and Caribbean origin participated in prenatal diagnostic tests equally or more often than Dutch women was unexpected. The low uptake among Dutch women may be related to the Dutch pregnancy culture. The finding that women of North-African origin and women from low socio-economic background had a lower uptake may be related to barriers in access to prenatal diagnostic tests.

Ethnic differences in considerations whether or not to participate in prenatal screening for Down syndrome

To evaluate ethnic differences in considerations whether or not to participate in prenatal screening for Down syndrome and to relate these to differences in participation.

Midwives unable to overcome language barriers in prenatal care

Background : the present study aims to explore to what extent midwives experience barriers in providing information about prenatal screening for Down syndrome to women from diverse ethnic backgrounds, and to assess their competences to overcome these barriers. Methods : midwives from 24 Dutch midwifery practices in Rotterdam completed a structured webbased questionnaire (n=57). Data were obtained on perceived ethnic-related differences and barriers in providing information on prenatal screening, preparedness to provide cultural competent care, and the use of translated materials and professional translators. A group interview was conducted to further explore the results emerging from the questionnaire (n=23). Results : almost all midwives (95%) experienced barriers in informing women from non-Western ethnic backgrounds about prenatal screening. Midwives especially felt incompetent to provide information to pregnant women that hardly speak and understand Dutch. In total 58% of the midwives reported that they never used translated information materials and 88% never used professional interpreters in providing information on prenatal screening. The main reasons for this underutilization were unawareness of the availability of translated materials and unfamiliarity with the use of professional interpreters. Conclusions : although language barriers were reported to be the main difficulty in providing cultural competent care to patients from diverse ethnic backgrounds, only a minority of the midwives used translated materials or professional interpreters. In order to enable all pregnant women to make an informed decision whether or not to participate in prenatal screening, midwives’ competences to address language barriers should be increased.

Diabetes self-management support for patients with low health literacy: Perceptions of patients and providers针对低健康素养患者的糖尿病自我管理支持：患者与提供者的观念: Health literacy and diabetes self-management

The aim of the present study was to explore perceptions and strategies of health care providers regarding diabetes self‐management support for patients with low health literacy (LHL), and to compare their self‐management support with the needs of patients with LHL and type 2 diabetes. This study serves as a problem analysis for systematic intervention development to improve diabetes self‐management among patients with LHL.