Proefschrift Gitsels

Religious beliefs in decision-making and counselling around prenatal

anomaly screeningViews of pregnant Muslim Turkish

and Moroccan women and midwives

Religious beliefs in decision-making and counselling around prenatal anom

aly screening Janneke G

itsels - van der Wal

Janneke Gitsels - van der Wal

UitnodigingVoor het bijwonen van de openbare

verdediging van het proefschrift

Religious beliefs in decision-making and

counselling around prenatalanomaly screening

Views of pregnant Muslim Turkish and Moroccan

women and midwives

door Janneke Gitsels-van der Wal

[email protected]

maandag 15 juni 2015 om 11.45 uur preciesin de aula van de Vrije Universiteit

De Boelelaan 1105, Amsterdam

na afloop is er een eenvoudige lunch

rond 15.00 uur vindt de (gezamenlijke) receptie plaats, dit is na de openbare

verdediging van Linda Martin om 13.45 uur

Paranimfen

Miranda [email protected]

Lisanne Gitsels [email protected]

(kinderen tot 9 jaar mogen de verdediging niet bijwonen)

Religious beliefs in decision-making and counselling

around prenatal anomaly screening

Views of pregnant Muslim Turkish and Moroccan women and midwives

Janneke Gitsels-van der Wal

This thesis was prepared within the faculty of Theology at the VU University Amsterdam and within the department of Midwifery Science of the EMGO Institute for Health and Care Re-search at the VU Medical Center and the AVAG Midwifery Academy Amsterdam Groningen.

This thesis was funded by the Midwifery Academy Amsterdam Groningen (AVAG) and by the Royal Dutch Organization of Midwives (KNOV) Scholarship 2012.

Layout: Gildeprint EnschedeLayout and photography cover: Ruben Timman, www.nowords.nlPrinted by: Gildeprint EnschedeISBN/EAN: 978-94-6108-983-0© copyright, 2015, J.T. Gitsels-van der Wal

VRIJE UNIVERSITEIT

Religious beliefs in decision-making and counselling

around prenatal anomaly screening

Views of pregnant Muslim Turkish and Moroccan women and midwives

ACADEMISCH PROEFSCHRIFT

ter verkrijging van de graad Doctor aande Vrije Universiteit Amsterdam,

op gezag van de rector magnificusprof. dr. F.A. van der Duyn Schouten,

in het openbaar te verdedigenten overstaan van de promotiecommissie

van de Faculteit der Godgeleerdheidop maandag 15 juni 2015 om 11.45 uur

in de aula van de universiteit,De Boelelaan 1105

door

Jantje Theodora Gitsels-van der Wal

geboren te Aduard

promotoren: prof. dr. J.S. Reinders prof. dr. E.K. Huttoncopromotoren: dr. J. Manniën dr. P.S. Verhoeven

Beoordelingscommissie:

prof. dr. R.R. Ganzevoortprof. dr. M.C. Cornelprof. dr. J.M.M. van Lithprof. dr. R. de Vriesdr. M. Ajouaoudr. M.P. Amelink-Verburgdr. E.R. Spelten

Paranimfen:

dr. M. KlaverL.A. Gitsels MSc

Voor Hannah, Lydia, Paula en Lisanne, en voor Silvana, Fatima, en Yasemin en alle andere (zwangere) vrouwen

Bijna nooitZie je een vogel in de lucht

Zich bedenken,Zwenken,

Terug

J. Herzberg

Table of contents

1. General introduction 11

2. Factors affecting the uptake of prenatal screening tests for congenital 23 anomalies; a multicentre prospective cohort study

3. The role of religion in decision-making on antenatal screening of 45 congenital anomalies: a qualitative study among Muslim Turkish origin immigrants

4. A qualitative study on how Muslim women of Moroccan descent 61 approach antenatal anomaly screening

5. Muslim women’s preferences towards antenatal counselling for 81 anomaly screening

6. Prenatal screening for congenital anomalies: exploring midwives’ 101 perceptions of counseling clients with religious backgrounds

7. General Discussion 119

8. Summary/Samenvatting 133

9. PhD portfolio 147

10. List of Publications 151

11. Curriculum Vitae 155

12. Dankwoord 159

Chapter 1General introduction

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General introduction

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1Prenatal anomaly screening

In 1994, the Dutch National Health Council published a report arguing that the aim of prenatal anomaly screening should be to provide future parents with appropriate information about diseases that could potentially be detected and that participation should be strictly voluntary [1]. The Dutch government adopted the Health Council’s report and decided on an opt-in approach for the national prenatal anomaly screening programme [2]. The explicit aim of this programme has been to offer future parents the option of an informed reproductive choice, entailing two decisions: 1) whether or not to participate in the screening programme and 2) whether or not to terminate a pregnancy in the event of an anomaly being diagnosed [2]. In the words of the National Health Council’s Commission on Genetic Screening, “Genetic screening must enable people to escape fate by giving them the freedom to make an informed choice and adopt a course of action that they regard as acceptable.” [1]. The Committee further emphasised access to an appropriate level of care for new-borns and children affected by genetic disorders as a precondition for voluntary participation in the screening programme tests [1]; after all, an inadequate level of care could create an imbalance in the choice between termination of an affected pregnancy and raising a child with a disability. Both arguments – informed choice and voluntary participation – indicate that pregnant women themselves rather than the Dutch government should decide whether or not to have prenatal anomaly screening [1]; an opt-in approach was therefore preferred.

Prenatal screening for congenital anomalies has been offered to all pregnant women in the Netherlands since 2007. The available screening comprises two non-invasive tests: the Combined Test (CT) at twelve weeks’ gestation and the Fetal Anomaly Scan (FAS) at twenty weeks’ gestation. The CT is a risk assessment for Down’s syndrome, Trisomy 21. In 2011, risk assessments for Edwards’ syndrome and Patau’s syndrome (trisomies 18 and 13 respectively) were added to the CT [3]. The FAS is an ultrasound for detecting structural anomalies. Both CT and FAS potentially require three decisions: 1) to have the screening test, 2) to follow up positive screening results with diagnostic tests that carry an associated 0.5% risk of miscarriage, and 3) when a positive finding is confirmed, to terminate the pregnancy before 24 weeks’ gestation or prepare for having a child with an anomaly. The CT is offered free to women aged 36 or above, whereas younger women pay approximately 150 euros. The FAS is offered at no charge to all women.In the context of prenatal anomaly screening, one important ethical consideration need to be mentioned. Prenatal anomaly screening is covered by the Population Screening Act [2]. A cornerstone of the Population Screening Act is the treatability of a disease. In prenatal anomaly screening, chromosomal disorders such as Down’s syndrome are not treatable or curable. Furthermore, population screening is in general aimed at prevention, but prevention

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is not the aim of prenatal anomaly screening [4]. After all, the aim of prenatal anomaly screening tests is to offer (future) parents the option of an informed reproductive choice with some possible courses of action in the event of an anomaly being diagnosed [2]. Prenatal anomaly screening therefore has a special status within the Population Screening Act [4,5].

The Dutch opt-in approach to prenatal anomaly screening is not common in European countries. For instance the Down’s syndrome screening test is offered free in Denmark to all pregnant women and recommended by the government, which would seem to be an opt-out approach to prenatal anomaly screening [6]. These different approaches result in a big difference in uptake of the CT: around 27% in the Netherlands and 90% in Denmark [6-8]. A recent study comparing Down’s syndrome screening policies and programmes among stakeholders in the Netherlands, Denmark and England reveals that the Dutch context of ‘the right not to know’ and the ‘user pays’ approach to the CT partly explain the low participation in the CT programme in the Netherlands [6]. Factors such as age, family situation, socio-economic status, ethnicity, personal experiences and religious beliefs also affect the uptake of the CT [9-17]. In the Netherlands, the mean uptake of the FAS is around 91% [7,18], which is a little bit lower than for example in Sweden (99-100%) [19]. No research into factors associated with the uptake of the FAS was available.

Counselling for client decision-making on prenatal anomaly screening

The specific aim of the Dutch policy on prenatal anomaly screening is reflected in the way that counsellors are responsible for providing support for pregnant women in decision-making about prenatal anomaly screening. There is also a strong emphasis on facilitating informed choices by pregnant women or couples about their future child. An informed choice should be “based on relevant knowledge, consistent with the decision-maker’s values and beliefs, and behaviourally implemented” [20-22]. In order to facilitate informed choices, client-centred counselling for prenatal screening consequently entails:

- ‘health education’ (e.g. giving information about prenatal congenital anomaly tests and conditions that could be detected, such as Down’s syndrome and spina bifida),

- ‘decision-making support’ (e.g. exploring the client’s personal values and beliefs with regard to disability and termination),

- building a good ‘client-counsellor relationship’ (e.g. showing “genuine interest” in each individual client) [23-27].

The aim of facilitating informed choices by their clients requires counsellors to be non-directive, not placing even indirect pressure towards one particular choice [1,23,28]. The



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1counsellors’ own views on prenatal anomaly screening and the tests involved should be absent from the counselling process, implying no interference with the clients’ decision. The non-directive attitude also implies that counsellors should be respectful to and supportive of their clients’ actual decisions [1,6,23,28-30]. Supporting the client’s actual decision means helping clients to explore their views on the value of human life, and the value of a life lived with a disability, as well as the value of an unborn life in view of an optional termination of the pregnancy [1,29,30]. This counselling approach, which supports client decision-making in the light of their own values and beliefs, is based on the view that decisions about having prenatal anomaly screening are too private and too overwhelming to be made by anyone other than the client [1,30,31].

The role of religion in decision-making on prenatal anomaly screening

The task of helping clients make decisions in the light of their values and beliefs is the subject matter for this study. As the reasoning behind the decision-making support task indicates, the private nature of the decisions should be respected; however, at the same time, the task of facilitating these decisions using the clients’ values and beliefs means that counsellors must be prepared to some extent to be invited into that private domain. A particularly sensitive point in this regard is how counsellors relate to religious values and beliefs. The question can be approached from the perspectives of both the clients and their counsellors.

Clients’ decision-makingFaced with the option of prenatal anomaly screening, the ultimate question for clients is whether they want to know if their future child will have a congenital anomaly, and if so whether they prefer to raise a child with a disability or to terminate the pregnancy. These are difficult moral questions for which clients can only find answers by digging deeply into their views on life, unborn life and living with a disability. For religious clients, these questions will presumably make them consult their religious values and beliefs [9,11,12,32,33].Projecting these conjectures onto the Dutch context, the relevant facts are that approximately 50% of the Dutch population have a religious background, and that Christianity and Islam are the two main religions with 44% and 6% adherents respectively among the Dutch population [34,35]. Furthermore, religious beliefs among Christians about the value of human life, unborn life, and living with a disability are generally familiar to healthcare professionals, whereas Islamic views on decisions about prenatal anomaly screening are less well known.The main issue to be addressed by the present study emerges from that context. In the Netherlands, people with an Islamic background are also a growing proportion of the general population. Most of these families are of Turkish or Moroccan descent, and almost all of them are Muslim [36]. When Muslim women become pregnant and are faced with the option

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of participating in prenatal anomaly screening programme, do their religious values and beliefs enter into the decision-making process, and if so how? And what do Muslim women’s religious beliefs and their effect on the decision-making process imply for their counsellors? The counsellors are responsible for helping their clients decide, using their values and beliefs: what does that entail? Should counsellors know about Islamic beliefs? Should they ask about Islamic beliefs?Research has shown that Muslim women’s decision to participate in prenatal screening programmes may depend on several factors, of which religion is an important one [9,32]. Pregnant Muslim women generally do not opt for the combined test, often claiming that their faith does not allow termination [32,37]. But the general picture is by no means clear. For example, Lind described a few cases among pregnant Muslim women with a confirmed serious anomaly of the fetus, after which some terminated and some women continued their pregnancy. He suggested that the decisions of these women depended on what their imams said [38]. On the other hand, there are Islamic sources that indicate that under certain conditions termination of pregnancy is officially permitted, as in the case when a fetus is diagnosed with a serious anomaly [39]. Should Muslim women be told about these sources, given the aim of informed decision-making?

Midwives as counsellorsIn the Netherlands, more than 80% of pregnant women start prenatal care in primary care midwifery practices. Primary care midwives are therefore the ones who counsel the majority of pregnant women for prenatal anomaly screening [2,40]. With the implementation of the national prenatal anomaly screening programme in 2007, counselling became a new role that was added to the professional role of midwives. Looking at the three functions of counselling that were distinguished above, midwives have long been familiar with the task of health education, and building good client-midwife relationships has always been part of the profession. But decision-making support was a new function that came with their new role as counsellors for prenatal anomaly screening. Given that they have the task of counselling religious clients, midwives have become familiar with certain religious rituals during pregnancy, birth and the postnatal period (for example whispering a sentence from the Koran right after the birth of the baby). However, exploring clients’ religious beliefs and convictions to help their decision-making processes was entirely new for midwives.A particularly relevant consideration in this connection is the extent of secularisation in the Netherlands. For decades, the prevailing opinion has been that religion is a declining phenomenon that is being driven out of the public domain and into the private domain. This meant among other things that religiously based healthcare organisations have seen their religious identity in decline. Communicating with patients about tests, therapies and treatments against a religious background was no longer self-evidently part of the



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1interaction between the professional and the client. However, in 2006 the Scientific Council for Government Policy cautiously identified a resurgence of religion in the public domain [34]. Consequently, the experience of being confronted with (unfamiliar) religious beliefs is relatively new for contemporary healthcare professionals. As healthcare professionals in the Netherlands have always worked at the intersection where publicly regulated healthcare services are delivered to private patients, their professional practice is a key location of the resurgence of religious discourse in the public setting. This is particularly true for midwives in their role as counsellors for prenatal anomaly screening and testing.Although relatively new in the Dutch context, the recognition of religion and religious backgrounds as a potentially important topic in clients’ decision-making has been supported in the context of counselling on prenatal anomaly screening. After all, pregnant women’s decisions whether or not to participate in the anomaly screening programmes is based on their views on life, unborn life and living with a disability. Several international studies have underlined the role of religion in decision-making in genetic counselling and highlight the importance of having some knowledge of religious beliefs and convictions [41-43]. Reis et al. state that “although professionals ought not to assume the role of spiritual advisor, a working knowledge of doctrinal approaches should help counsellors frame the issues, and avoid missteps” [41]. Hasnain et al. investigated provision of culturally appropriate and patient-centred care to Muslim women in the US and recommended education for counsellors focused on the basic religious and cultural beliefs of Muslim women [44]. Another study in Australia about prenatal testing services for Muslim women explored miscommunication between pregnant women and the midwives, which was partly due to “a lack of cultural appreciation among healthcare providers” [45]. For example, pregnant women felt that even where they understood the language properly, midwives asked interpreters in simply because the pregnant women were wearing scarves [45]. A qualitative Canadian study of maternity healthcare looking at the needs of immigrant Muslim women found that women perceived insensitivity and lack of knowledge about their religious and cultural daily life [46]. Other studies have confirmed that professional knowledge of religious and cultural backgrounds of the clients is important, but insufficient [37,47-50].In view of this literature, the present study explores the issue of religious values and beliefs in the context of counselling for prenatal anomaly screening and testing in the Netherlands. The study researches the opinions of both Muslim women and the midwives who act as their counsellors. It also researches how Muslim women understand the role of religion in the decision-making process. Although most couples want to decide together whether or not to take prenatal anomaly screening tests [51,52], in our study we were interested in women’s decision-making and preferences for appropriate counselling and we therefore only interviewed Muslim women and not their partners. The findings will extend the knowledge of the use of religious information in the context of prenatal screening, as part of a professional

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practice offered in the public domain. This knowledge will contribute to how the notion of informed choice is currently understood within the practice of counselling, and whether providing religious information is regarded as legitimate part of it. The significance of the project for midwifery counselling in the Netherlands is in its focus on what aiming to give Muslim clients at an informed choice demands, in terms of engaging with their views on human life, unborn life and living with a disability. This knowledge will help to further improve of client-centred counselling.

Study design

This research project is part of the DELIVER study, a unique multi-centre prospective dynamic cohort study to evaluate primary care midwifery in the Netherlands [53]. The main focus of this first nationwide study is on quality, organisation and accessibility of primary care midwifery. It aims to contribute to evidence-based practice and improve midwifery care in the Netherlands [53]. Purposive sampling was used to select practices, using three stratification criteria: region (north, east, south, west), level of urbanisation (urban or rural area), and practice type (dual or group practice); in total, 7685 clients and 136 midwives and assistants from 20 primary care midwifery practices participated in the DELIVER study (for detailed information of the study design, see [53]). As part of the contribution to evidence-based practice in midwifery, in addition to this thesis, several sub-studies were embedded in DELIVER. These included pain management during labour, lifestyle during pregnancy and midwives’ and clients’ preferences about counselling on prenatal anomaly screening. A video observational study that focused on the first prenatal consultation was added to the DELIVER study.Regarding this thesis, data from the DELIVER to study that has been used concerns questionnaires completed by midwives and by clients from 20 primary care practices across the Netherlands between August 2009 and March 2011. Regarding the qualitative part of the thesis, 22 retrospective open interviews with pregnant Muslim Turkish and Moroccan women were conducted in 2008 and 2011-2012 respectively.

Aims of the thesis

Because of the lack of research into the role of religion in decision-making on prenatal anomaly screening in the Netherlands, the overall aim of this thesis is to gain insights into the role of pregnant women’s religious backgrounds in their decisions whether or not to have the prenatal anomaly screening tests (the Combined Test and the Fetal Anomaly Scan). The first aim of the thesis is to determine what factors are associated with the uptake of both prenatal anomaly screening tests. The second aim is to explore pregnant Muslim women’ s



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1views on life and the religious beliefs that they state are relevant for their decision-making, and to explore pregnant Muslim women’s preferences as to what constitutes appropriate counselling on prenatal anomaly screening, also in the light of their religious beliefs. The third aim is to explore the extent to which counsellors take the religious backgrounds of their clients into account and to explore their knowledge about termination according to Islamic beliefs.

Outline of the thesis

To understand the differences in uptake, Chapter 2 describes a nationwide cross-sectional study to assess the uptake of the Combined Test and the Fetal Anomaly Scan and what factors have influenced the uptake of each of the two tests. Background characteristics of pregnant women were used to determine possible associations with the uptake of the tests.In order to understand the possible influence of religious background and individual perspective on the value of unborn life and disabled life on the decision to have prenatal anomaly screening, Chapter 3 investigates in depth what role religious beliefs play in decision-making on prenatal anomaly screening among pregnant Muslim women. Because migrants from Turkey are the largest minority with an Islamic background in the Netherlands, pregnant Turkish Muslim women were interviewed.How Muslim women from different countries of origin and different Islamic schools approach prenatal anomaly screening is discussed in Chapter 4,where the research was extended by including Muslim women of Moroccan descent (being the second largest Muslim minority in the Netherlands).As described in Chapter 5, the same pregnant Muslim Moroccan women were also interviewed to determine their preferences for the content and approach to prenatal counselling for anomaly screening and their preferences for the counsellor’s knowledge of Islamic beliefs related to decision-making on anomaly screening.Chapter 6 explores the ways counsellors include the role of religion in their practice. Their knowledge of Islamic beliefs about termination of pregnancy, the extent to which counsellors think that they should take the client’s religious beliefs into account during counselling and the extent to which they actually do so, plus other factors related to taking client’s religious beliefs into account are all described in this chapter.Finally, Chapter 7 summarises the main results of this thesis, discussing them and placing them in a broader context. This chapter also presents the resulting practical implications and recommendations for future research.

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51. Martin L, Van Dulmen S, Spelten E, Hutton E. Prenatal genetic counseling: Future parents prefer to make decisions together, using professional advice. Prenat Diagn 2012; 32(1):1–128.

52. Hillman SC, Skelton J, Quinlan-Jones E, Wilson A, Kilby MD. “If it helps . . .” The Use of Microarray Technology in Prenatal Testing: Patient and Partners Reflections. Am J Med Genet Part A 2013; 161A(7):1619-27.

53. Manniën J, Klomp T, Wiegers T, Pereboom M, Brug J, Jong A, van der Meijde M, Hutton E, Schellevis F, Spelten E. Evaluation of primary care midwifery in the Netherlands: design and rationale of a dynamic cohort study (DELIVER). BMC Health Serv Res 2012;12:69-79.

Chapter 2Factors affecting the uptake of prenatal screening tests for

congenital anomalies; a multicentre prospective cohort study

Gitsels–van der Wal JT, Verhoeven PS, Manniën J, Martin L, Reinders HS, Spelten E, Hutton EK.

BMC Pregnancy and Childbirth 2014;14(1):264.

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Abstract

Background: Two prenatal screening tests for congenital anomalies are offered to all pregnant women in the Netherlands on an opt-in basis: the Combined Test (CT) for Down syndrome at twelve weeks, and the Fetal Anomaly Scan (FAS) at around twenty weeks. The CT is free for women who are 36 or older; the FAS is free for all women. We investigated factors associated with the CT and FAS uptake.

Method: This study is part of the DELIVER study that evaluated primary care midwifery in the Netherlands. Associations between the women’s characteristics and the CT and FAS uptake were measured using multivariate and multilevel logistic regression analyses.

Results: Of 5216 participants, 23% had the CT and 90% had the FAS, with uptake rates ranging from 4% to 48% and 62% to 98% respectively between practices. Age (OR: 2.71), income (OR: 1.38), ethnicity (OR: 1.37), being Protestant (OR: 0.25), multiparous (OR: 0.64) and living in the east of the country (OR: 0.31) were associated with CT uptake; education (OR: 1.26), income (OR: 1.66), being Protestant (OR: 0.37) or Muslim (OR: 0.31) and being multiparous (OR: 0.74) were associated with FAS uptake. Among western women with a non-Dutch background, first generation (OR: 2.91), age (OR: 2.00), income (OR: 1.97), being Protestant (OR: 0.32) and living in the east (OR:0.44) were associated with CT uptake; being Catholic (OR: 0.27), Protestant (OR: 0.13) were associated with FAS uptake. Among non- western women with a non-Dutch background, age (OR: 1.73), income (OR: 1.97) and lacking proficiency in Dutch (OR: 2.18) were associated with CT uptake; higher education (OR: 1.47), being Muslim (OR:0.37) and first generation (OR: 0.27) were associated with FAS uptake.

Conclusion: The uptake of the CT and FAS varied widely between practices. Income, parity and being Protestant were associated with uptake of both tests; ethnicity, age and living in the east were associated with CT uptake, and education and being Muslim with FAS uptake. These findings help to explain some differences between women choosing or declining early and late screening, but not the large variation in test uptake among practices, nor between the Netherlands and other countries.

Keywords: congenital abnormalities, fetal anomaly scan, Down Syndrome, combined test, second trimester pregnancy, religion, immigrants, ultrasonography


Factors affecting the uptake of prenatal screening tests for congenital anomalies

25

2

Background

Since 2007, all pregnant women in the Netherlands are informed about prenatal congenital anomaly screening tests. The available screening consists of two non-invasive tests: the Combined Test (CT) at around twelve weeks to determine the possibility of Down syndrome, and the Fetal Anomaly Scan (FAS) at around twenty weeks’ gestation to detect structural anomalies. Both CT and FAS potentially require three decisions: 1) whether to have (one of) the screening test or not, 2) whether or not to follow up positive screens with diagnostic tests, which carry an associated 0.5% risk of miscarriage and 3) if diagnostic tests confirm a positive finding, whether to terminate the pregnancy before 24 weeks’ gestation or prepare for having a child with an anomaly. In contrast to other countries such as the United Kingdom, Denmark and Iceland, the tests are not routinely offered as part of prenatal care in the Netherlands [1–4]. Although both tests are part of a population based screening programme, they are not offered on the same basis. The CT is free of charge for women who are 36 or older, while younger women choosing to have the test pay approximately 150 euros; the FAS is free for all women.The mean uptake of prenatal congenital anomaly screening tests in the Netherlands has been around 27% for some years for the CT but varies between different regions (12% to 52%) [5–8]; the mean uptake of the FAS has been around 91% (80% to 99%) [6, 7]. Both tests’ uptake figures are considerably lower than in other European countries [1–4]; in Denmark and Iceland for example, the CT uptake is at least 90% and in Sweden the FAS uptake is up to 100% [3, 4, 9]. Earlier studies of the CT have shown that factors such as age, parity, ethnicity, socioeconomic status, immigrants’ language proficiency and religion can influence uptake decisions [8, 10–19]. However, although both CT and FAS are part of the prenatal congenital anomaly screening programme, little is known about the factors influencing second-trimester FAS uptake. We were also interested in the sub-groups of western and of non-western women with a non-Dutch ethnic background getting care in the Netherlands. In 2010, women with a non-Dutch ethnic background were responsible for 27% of all live births [20] and it is known that immigrant women have made suboptimal use of prenatal care in the past [21, 22]. To understand the differences in uptake and to use this knowledge to ensure that all women have equal access to prenatal anomaly screening, it is important to identify determinants influencing the uptake of the CT and the FAS. Therefore, the present nationwide study investigated factors influencing the uptake of the prenatal anomaly screening tests.Based on previous studies [8, 10–19] and the fact that both the CT and the FAS are followed by the same diagnostic options for positive results, we hypothesized that CT and FAS screening uptake would be associated with religious background, age, parity, socioeconomic status and ethnicity, and that (except for ethnicity) the same hypotheses plus an association with proficiency in Dutch language would hold for women with a non-Dutch background.

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Of all pregnant women in the Netherlands, more than 80% start their prenatal care in primary care midwifery and receive information and counselling about prenatal screening from primary care midwives [23]. This study was therefore undertaken in primary care midwifery practices. MethodsStudy designFor this study we used data from the DELIVER study, a multicentre prospective dynamic cohort study evaluating primary care midwifery in the Netherlands. Between September 2009 and February 2011, data were collected from clients and midwives in twenty midwifery practices across the Netherlands. The clients’ response rate at the twenty practices was 58% on average and ranged from 32% to 72%. A complete overview of the design of the DELIVER study was given by Manniën et al. [24]. Depending on when clients started prenatal care relative to the timing of the study, clients may have completed one, two or three questionnaires. Questions regarding use of the CT and the FAS were asked in both the second questionnaire (completed between 35 weeks of gestation and birth) and the third questionnaire (completed six weeks post-partum). We used data from all participants who completed either questionnaire; in the case of women who completed both questionnaires, we used their responses to the questionnaire completed between 35 weeks and birth. Socio-demographic characteristics such as parity, consanguinity and Dutch language skills among women with a non-Dutch ethnic background were asked as part of a demographic profile in the first questionnaire completed by a study participant. Privacy was guaranteed in accordance with Dutch legislation. Participants’ anonymity was maintained by using anonymous practice identifiers.MeasuresIn this study, accepting or declining the CT or FAS were the (dichotomous) dependent variables. The demographic data collected included religious background, age, education and after tax income per household. The Netherlands was divided into four regions (north, east, west and south). We used the classification of Statistics Netherlands to determine women’s ethnicity as Dutch or non-Dutch, that is: having at least one parent born in a country other than the Netherlands [25]. For non-western women with a non-Dutch ethnic background, we again used the classification of Statistics Netherlands and included those women from Africa, Latin-America, Asia (except for Indonesian and Japan) or Turkey [26]. A woman was of the first generation non-Dutch if she was born abroad, a woman was of the second generation non-Dutch if (one of) her parents was born abroad. Consanguinity was ascertained by asking the question if her partner is a cousin, uncle or nephew. Participants of non-Dutch ethnic background were asked to rate their Dutch proficiency using a four-point scale (none, a little, fair and excellent) on four items that assessed speaking, understanding, reading and writing Dutch. A woman was nulliparous if she had not given birth before; multiparous pregnant women were those who had given birth before.



27

2

Analysis procedureIn the preparatory analyses, we constructed new variables. Using the Dutch Protestant ecclesiastical map, we constructed a variable in which the different religions and denominations are grouped into the following resulting categories: ‘Catholic’; ‘Protestant’ = Protestant Church, smaller orthodox Calvinist, Evangelical and Pentecostal Churches, Mennonites/Armenians/Episcopalism; ‘Islam’; ‘other’ = Judaism, Buddhism, Hinduism; ‘would not say’ =would not say or do not know; ‘none’ = none, Humanism. Based on the relationship between the age of the mother and the probability of being pregnant with a child with trisomy 21 (Down Syndrome), we divided age into three groups (≤30, 31–35, ≥ 36) [27]. We divided the level of education into three groups (‘low’ = mainly primary school and some vocational training, ‘medium’ = secondary school and completed vocational training, ‘high’ = college and/or university) [28]. We dichotomized income into the following categories: category 1= none to the mean disposable income; and category 2 = higher than the mean disposable income in the Netherlands in 2010 (1811 euros/month). Disposable income is total income after tax. We constructed a new variable for Dutch proficiency by taking the mean score for speaking, understanding, reading and writing (Cronbach’s alpha 0.98). Additionally, the Dutch proficiency variable was dichotomized into ‘excellent’ and ‘limited’ (none, a little or fair).Descriptive statistics were used to summarize socio-demographic characteristics. We used univariate logistic regression analyses to obtain odds ratios and 95% confidence intervals to determine if the background characteristics, pregnancy-related variables, Dutch languages skills among women of non-Dutch ethnic background significantly influenced test uptake. We performed χ2 tests in order to examine a possible association between the aforementioned factors and uptakes of the CT and FAS. We used multivariate logistic regression analysis to determine the association between CT and FAS uptake whereby every significant variable (p< 0.05) from the univariate tests was added as a predictor. Separate models were analysed for the uptake of the two dependent variables, uptake of the CT and of the FAS (yes/no). Backward selection was performed on the initial multivariate model for the sequential removal of variables: in each step, the variable with the largest pvalue was removed until the model contained only statistically significant variables (two-sided p < 0.05).Next, multilevel analyses were carried out to account for any possible effects due to differences between practices. The likelihood ratio test was used to determine if there was a random intercept for ‘practice’. Random slopes for each variable were then considered to assess whether the influence of the variable was different for different practices. Again, the likelihood ratio test was used to evaluate the benefit to the model of a random slope for a variable. The final logistic regression model for each independent variable was determined using backward selection.Lastly, we performed a subgroup analysis for non-Dutch women following the same procedures as outlined above excluded multilevel analyses. We used the same variables as for

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the complete study population, except that we removed ethnicity and added the variables of Dutch language proficiency and generation. STATA 10.0 was used for the multilevel analyses; the other analyses were performed using SPSS 21.0.

ResultsOf the 7,907 participants in the DELIVER study, 5216 women completed questionnaires containing questions about CT and FAS. Comparison with the national perinatal registration revealed that our study population is representative for parity (nulliparous: 47% in our data versus 48% nationwide) and age (aged 34 or younger: 79% versus 78%), but had more highly educated women (51% versus 42%) and fewer ethnic minority women (16% versus 27%) [24].Table 1 shows background characteristics of the participants in relation to the uptake of the CT and FAS. It also provides information from the univariate logistic regression analyses. The mean actual uptake for the CT was 23% (1,183/5,216), and 90% for the FAS (4,679/5,216). The average CT uptake of women with a non-Dutch background was 29% (237/808), significantly higher in comparison to the native Dutch participants of this study (22%; p < 0.001). The average uptake for FAS of women with a non-Dutch background was 89% (720/808), a proportion very similar to the native Dutch participants in the study. The uptakes ranged in the practices from 4% to 48% for the CT and from 62% to 98% for the FAS (Table 2). Table 3 shows the results of the multivariate logistic regression analyses. Cells with small numbers were left out of the analysis.



29

2

Table 1. Background characteristics of the study population and univariate logistic regression analyses of the uptake of the combined test (CT) and the fetal anomaly scan (FAS) among pregnant women participating in the DELIVER study.Determinant Population CT Uptake FAS Uptake

N (%)a N (%)b OR (95% CI) N (%)b OR (95% CI)Total 5,216 (100) 1,195 (23) 4,679 (90)Religion None 3,042 (59) 852 (28) 1 2,909 (95) 1Islam 247 (5) 50 (20) 0.66 (0.48-0.90)c 198 (80) 0.20 (0.14-0.28)d

Protestantism 1,210 (23) 74 (6) 0.17 (0.13-0.22)d 913 (76) 0.15 (0.12-0.19)d

Catholicism 547 (10) 166 (30) 1.13 (0.92-1.37) 514 (94) 0.76 (0.52-1.12)Othere 37 (1) 17 (46) 2.19 (1.14-4.21)c 35 (95) 0.85 (0.20-3.59)Would not say 90 (2) 24 (27) 0.94 (0.58-1.51) 78 (87) 0.32 (0.17-0.60)d

Age (years)≤ 30 2,507 (48) 326 (13) 1 2,235 (89) 131-35 1,872 (36) 463 (25) 2.20 (1.88-2.57)d 1,700 (91) 1.20 (0.98-1.47)≥36 833 (16) 406 (49) 6.36 (5.32-7.61)d 741 (89) 0.98 (0.76-1.26)Level of education Low 697 (13) 145 (21) 1 575 (82) 1Medium 1,867 (36) 329 (18) 0.81 (0.66-1.01) 1,658 (89) 1.68 (1.32-2.15)d

High 2,627 (51) 713 (27) 1.42 (1.16-1.74)c 2,421 (92) 2.49 (1.96-3.18)d

Ethnic background Dutch 4,397 (84) 956 (22) 1 3,948 (90) 1Non-Dutch 808 (16) 237 (29) 1.49 (1.26-1.77)d 720 (89) 0.93 (0.73-1.19)Income None to average 1,752 (41) 291 (17) 1 1,493 (85) 1Above average 2,507 (59) 675 (27) 1.85 (1.59-2.16)d 2,338 (93) 2.40 (1.96-2.95)d

RegionWest 1,511 (29) 461 (31) 1 1,360 (90) 1East 1,622 (31) 208 (13) 0.34 (0.28-0.40)d 1,371 (85) 0.61 (0.49-0.75)d

South 739 (14) 226 (31) 1.00 (0.83-1.22) 697 (94) 1.84 (1.19-2.63)d

North 1,344 (26) 300 (22) 0.65 (0.55-0.78)d 1,251 (93) 1.50 (1.14-1.96)dc

ParityNulliparous 2,472 (47) 602 (24) 1 2,298 (93) 1Multiparous 2,739 (53) 592 (22) 0.86 (0.75-0.96)c 2,376 (87) 0.50 (0.41-0.60)d

Consanguinity No 5,053 (99) 1,154 (23) 1 4,545 (90) 1Yes 58 (1) 11 (19) 0.79 (0.41-1.53) 42 (72) 0.29 (0.16-0.53)d

OR = Odds Ratio; CI = confidence interval; a sample size varies due to missing data; valid percentages are shown; b uptake percentage of population per category; c p<0.05; d p<0.001; e Judaism, Buddhism, Hinduism

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Table 2. Distribution of the average CT and FAS uptake across the participating midwifery practices.Practice

CT (%) FAS (%) Region 1 28 97 South 2 37 96 South 3 22 87 East 4 24 98 West 5 48 92 West 6 4 63 East7 14 94 North 8 22 92 North 9 41 94 West 10 16 92 East 11 13 90 North 12 29 96 North 13 5 76 West 14 11 95 East15 15 94 East16 23 91 North 17 4 62 East 18 33 89 West 19 15 86 South 20 42 94 West

Bold rows are practices located in the Dutch ‘Bible Belt’, a predominantly orthodox Protestant region

Table 3. Multivariate logistic regression analysis of all significant factors affecting test uptake amongst pregnant women participating in the DELIVER study.

CT Model (n=4,240) FAS Model (n=4,247)Predictor OR (95%CI) p-value OR (95%CI) p-valueHigher education 1.35 (1.16-1.58) <0.001Non-Dutch background 1.42 (1.13-1.79) 0.003Increasing age 2.76 (2.47-3.10) <0.001Protestantism 0.21 (0.16-0.28) <0.001 0.21 (0.17-0.27) <0.001Islam 0.61 (0.40-0.94) 0.023 0.37 (0.25-0.57) <0.001Above average income 1.43 (1.21-1.70) <0.001 1.73 (1.37-2.18) <0.001North region 0.63 (0.51-0.78) <0.001 1.30 (0.94-1.80) 0.107East region 0.35 (0.28-0.44) <0.001 0.73 (0.56-0.95) 0.021South region 1.18 (0.93-1.48) 0.171 1.53 (1.01-2.31) 0.030Multiparous 0.64 (0.54-0.76) <0.001 0.73 (0.61-0.87) 0.001

OR=odds ratio; CT model: -2 log likelihood = 3,771.198, 80% correctly predicted; FAS model: -2 log likelihood = 2,413.095, 90% correctly predicted

Table 4 shows the results of the multilevel analyses with a random intercept for practice in both the CT model and the FAS model, and additionally, a random slope for the effect of Protestantism in the FAS model. Regarding the CT model (χ2 (9, N = 4,240) = 412.63,



31

2

p < 0.001), increasing age, non-Dutch ethnicity and higher income had an independent positive impact on the uptake (Odds Ratio, OR: 2.71 (95% CI =2.41-3.05) p < 0.001; OR: 1.31 (95% CI = 1.04-1.66) p = 0.024; OR: 1.38 (95% CI = 1.16-1.65) p < 0.001 respectively), while being Protestant, multiparous and being from the eastern region compared with the western region had an independent negative impact on the uptake (OR: 0.25 (95% CI = 0.18-0.34) p < 0.001; OR: 0.63 (95% CI = 0.54-0.76) p < 0.001; OR: 0.31 (95% CI = 0.19-0.52) p <0.001 respectively). Education, being Muslim and being from the northern region were not independently associated with the CT uptake.

Table 4. Results of multilevel analysis; factors explaining variation in CT and FAS uptake among pregnant women participating in the DELIVER study.

Model CT (n=4,240) Model FAS (n=4,247)Predictor OR (95%CI) p-value OR (95%CI) p-valueHigher education 1.63 (1.07-1.49) 0.005Non-Dutch background 1.31 (1.04-1.66) 0.024Increasing age 2.71 (2.41-3.05) <0.001Protestantism 0.25 (0.18-0.34) <0.001 0.37 (0.24-0.56) <0.001Islam 0.31 (0.20-0.48) <0.001Above average income 1.38 (1.16-1.65) <0.001 1.66 (1.31-2.10) <0.001East region 0.31 (0.19-0.52) <0.001Multiparous 0.63 (0.54-0.76) <0.001 0.75 (0.62-0.89) 0.002

OR=odds ratio; random intercept for midwifery practices for both the CT model and the FAS model, additionally a random slope for Protestantism in the FAS model

In the FAS model (χ2 (8, N = 4,247) = 113.95, p < 0.001), higher education and higher income had an independent positive impact on the uptake (OR: 1.63 (95% CI = .1.07-1.49) p =0.005; OR: 1.66 (95% CI = 1.31-2.10) p < 0.001 respectively), while being Protestant, Muslim and multiparous had an independent negative impact on the uptake (OR: 0.37 (95% CI = 0.24-0.56) p < 0.001; OR: 0.31 (95% CI = 0.20-0.48) p < 0.001; OR: 0.75 (95% CI = 0.62-0.89) p= 0.002 respectively). None of the regions independently influenced the FAS uptake. The random slope for Protestantism in the FAS model means that the uptake among Protestant women is different across the different practices. The three practices with the highest proportion of Protestant women (83%, 78% and 57% respectively) had the lowest CT and FAS uptakes; conversely, practices with the lowest percentages of Protestant women (3%, 4% and 5% respectively) had higher than average CT and FAS uptakes.Finally, we performed subgroup analyses for the women with a western and women with a non-western non-Dutch ethnic background in the study population (respectively N = 401 and N = 400). The background characteristics of the women with a non-Dutch background that are related to the tests uptakes and information from the univariate logistic regression analyses are presented in Table 5.

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Tabl

e 5

Back

grou

nd ch

arac

teris

tics a

nd u

niva

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en

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FAS

upta

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OR

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Sam

ple

size

n (%

)a CT

upt

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n (%

)b │ O

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1 (1

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1 (3

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7 (9

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337

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Relig

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243

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103

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23

(6)

8 (3

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162

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217

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113

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In comparison with the western women with a non-Dutch ethnic background, the non-western women were more religious, mostly Muslim, younger, had less education, were more likely to be from the western region of the Netherlands, multiparous, from the first generation, and have lower incomes. This subgroup had a higher percentage of limited proficiency in Dutch. The mean actual uptake among western non-Dutch women for the CT was 35% (141/401), and 94% for the FAS (377/401). The mean actual uptake among non-western non-Dutch women for the CT was 24% (94/400), and 84% for the FAS (337/400). Additionally, limited proficiency in Dutch among western non-Dutch women (27% (50/182)) was only found in the first generation. Limited proficiency in Dutch among non-western non-Dutch women was mostly found in the first generation (98% (118/121)).The results of the multivariate logistic regression subgroups analyses are presented in Table 6. In the CT model for western women of non-Dutch ethnic background (χ2 (7, N =336) = 367.41, p < 0.001). Women who were Protestant, or living in the eastern region were significantly less likely to have the combined test (OR: 0.32 (95% CI =0.13-0.80) p=0.015; OR: 0.44 (95% CI = 0.21-0.93) p = 0.033 respectively). Older women, women with above average income, or women from the first generation were significantly more likely to have the CT (OR: 2.00 (95% CI = 1.44-2.78) p < 0.001; OR: 1.97 (95% CI = 1.12-3.45) p = 0.018; OR: 2.91 (95% CI = 1.75-4.85) p < 0.001 respectively). Being from the southern region and having limited proficiency in Dutch were not independently associated with the CT uptake.Regarding the FAS uptake (χ2 (2, N = 399) = 164.00, p < 0.001), among western non-Dutch women, being Protestant, or Catholic had an independent impact on the uptake; women with these characteristics were significantly less likely to have the FAS (OR: 0.13 (95% CI =0.05-0.34) p < 0.001; OR: 0.27 (95% CI = 0.09-0.81) p = 0.020 respectively).In the CT model for non-western women of non-Dutch ethnic background (χ2 (3, N = 392)= 408.96, p < 0.001), older women or women with a limited proficiency in Dutch were significantly more likely to have the CT (OR: 1.73 (95% CI = 1.25-2.39) p < 0.001; OR: 2.18 (95% CI = 1.34-3.56) p = 0.002 respectively). Being from the first generation was not independently associated with the CT uptake.Regarding the FAS uptake (χ2 (3, N = 395) = 305.82, p < 0.001), among non-western non-Dutch women, higher education had an independent positive impact on the uptake (OR: 1.47 (95% CI = .1.02-2.14) p=0.041), while being Muslim or from the first generation had an independent negative impact on the uptake (OR: 0.37 (95% CI = 0.19-0.72) p = 0.003; OR: 0.27 (95% CI = 0.13-0.59) p < 0.001 respectively). Being Protestant, having an income above average, and having a limited proficiency in Dutch were not independently associated with the FAS uptake.



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Table 6. Results of multivariate logistic regression subgroup analyses; factors explaining variation in the test uptake for women with western non-Dutch and with a non-western non-Dutch ethnic background participating in the DELIVER study.

CT Model FAS ModelWestern (n=336) (n=399)Predictor OR (95%CI) p-value OR (95%CI) p-valueProtestantism 0.32 (0.13-0.80) 0.015 0.13 (0.05-0.34) <0.001Catholicism 0.27 (0.09-0.81) 0.020Increasing age 2.00 (1.44-2.78) <0.001Above average income 1.97 (1.12-3.45) 0.018East Region 0.44 (0.21-0.93) 0.033First generation 2.91 (1.75-4.85) <0.001

Non-Western (n=392) (n=395)Predictor OR (95%CI) p-value OR (95%CI) p-valueIslam 0.37 (0.19-0.72) 0.003Increasing age 1.73 (1.25-2.39) 0.001Higher education 1.47 (1.02-2.14) 0.041Limited proficiency in Dutch 2.18 (1.34-3.56) 0.002First generation 0.27 (0.13-0.59) 0.001

OR=odds ratio; among women with a Western non-Dutch ethnic background: CT model: -2 log likelihood = 367.412, 69% correctly predicted; FAS model: -2 log likelihood = 164.002, 94% correctly predicted; among women with a non-Western non-Dutch ethnic background: CT model: -2 log likelihood = 408.956, 75% correctly predicted; FAS model: -2 log likelihood = 305.823, 85% correctly predictedReference categories per variable: Protestantism: not being a Protestant; Catholicism: not being a Catholic; Islam: not being a Muslim; Increasing age: 30 years or younger; above average income: below average or average income; Higher education: low education; East region: West Region; Limited proficiency in Dutch: excellent proficiency in Dutch; First generation: second generation

Discussion

This nationwide study focused on determining which factors are associated with the uptake of the prenatal congenital anomaly tests. Women were less likely to have the CT if they were multiparous, living in the eastern region, were native Dutch and identified themselves as Protestant; women were more likely to have the CT if they were older and had above average income. Women were less likely to have the FAS if they identified themselves as Protestant or Muslim and were multiparous, and women were more likely to have the FAS if they were more highly educated and had higher incomes. Contrary to our hypotheses, neither age nor ethnicity were associated with FAS uptake. Women in the subgroup of western non-Dutch ethnic background were less likely to have the CT if they identified themselves as Protestant and from the eastern region; women were more likely to have the CT if they were older, had higher incomes and from the first generation. Western women with a non-Dutch background were less likely to have the FAS if they identified themselves as Protestant or Catholic. Among the subgroup of non-western women with a non-Dutch ethnic background, these women

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were more likely to have the CT if they were older and had limited proficiency in Dutch. Non-western women with a non-Dutch background were less likely to have the FAS if they identified themselves as Muslim and from the first generation; women were more likely to have the FAS if they were higher educated.The mean CT uptake in our study (23%) was a little bit lower than reported in previous studies (27%) [6,7]. An explanation for the lower uptake in our study could be, that some participants who indicated that they did not have the CT may have entered prenatal care after the first trimester and thus been ineligible for the test; on the other hand, pregnant women in the Netherlands enter midwifery care around 9 weeks of gestation [29]. The mean CT uptake in our study is considerably lower than in other EU countries, such as the UK (60%) and Denmark (90%), where the CT is routinely offered as part of prenatal care [1–3]. The routine offering may act to normalise this screening test and increase its acceptance among pregnant women and partners. Previous studies have reported various reasons given by Dutch women for not opting for the CT: the test characteristics, high costs and attitudes towards Down syndrome [8, 10]. Religious women, for example, are more likely to accept a child with Down syndrome and less likely to terminate their pregnancy [30]. As in previous studies, we found a strong association between religious background and declining the CT [10–18]. An additional finding in our study is that the influence of religious background is faith-specific. Both Protestant and Muslim women show a much lower test uptake compared to Catholic women, who are similar to the non-religious group. In the Dutch context, this may be explained by Dutch Catholics generally having a more liberal attitude towards religious doctrines compared to Dutch Protestants [31]. The three midwifery practices with the lowest CT uptake were located in a predominantly orthodox Protestant region, known as the Dutch Bible Belt (Table 2), partly located in the eastern region, where for example the vaccination rate of children for infectious diseases is also low [31, 32].Our study confirmed the variation in CT uptake across the regions that have previously been reported [6–8]. We found clustering of data in the midwifery practices, demonstrating that in addition to regional variance there were large differences in CT uptake (4% to 48%) amongst practices even within regions. Part of this variance may be accounted for by the different ways in which health professionals present prenatal congenital anomaly screening tests to pregnant women [33]; part of this variance may be due to the aforementioned religious variations found across regions. Further investigation is needed into the underlying causes of differences at the practice level.Our study confirms earlier findings that women who were older than 30 were significantly more likely to have a CT [8, 10, 15] and is likely to reflect increased concerns about Down syndrome among older pregnant women. As is well known, the probability of bearing a child with Down Syndrome increases with the age of the mother [27]. Perhaps fewer younger women choose the CT because women younger than 36 must pay for the CT. This co-



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payment requirement may explain our study findings that women with a higher income have a significantly higher uptake [8].Another explanation for the relatively low CT uptake in the Netherlands could be that women who decline the CT do routinely receive an ultrasound at the same time to confirm the pregnancy and to calculate the due date. Unlike the case of the CT, women who decline the FAS do not receive an alternative routine second-trimester ultrasound. This could partly explain the differences between the low CT uptake and the high FAS uptake, as we do know that women like to see their baby on an ultrasound scan and that they experience a scan as an encounter with the baby [34].The mean FAS (90%) uptake in our study was comparable to the findings from earlier studies in the Netherlands [6, 7]. The mean FAS uptake in our study is lower compared to EU countries such as Sweden (99-100%) [10]. If we compare the Netherlands to other countries, an explanation of the high uptake in Sweden could be that the FAS was introduced by adding it to a routine second trimester ultrasound for fetal and placental measurements. Since the introduction of the screening programme in the Netherlands, women are offered the second-trimester ultrasound for detecting structural anomalies and fetal and placental measurements happen to be recorded at the same time; however, it was introduced primarily as screening for neural tube defects [35]. Women declining the FAS do not receive a routine ultrasound in the second trimester, which means that additional information that might be important in managing the pregnancy is not obtained. Several studies have stressed the importance of fetal growth measurements and placenta evaluation during the second trimester; fetuses smaller than expected between 18 and 22 weeks gestation are at risk of preterm birth and perinatal death, and abnormalities of the placenta can predict serious complications such as intrauterine growth restriction, preterm birth and preeclampsia [36–39]. The introduction of the FAS seems to be related to a decrease in perinatal mortality [40, 41]. Recently, Schoonen et al. developed an instrument to determine client’s decision-relevant knowledge about the FAS that only addresses determination of fetal anomalies and does not address fetal and placental measurements [32]. In view of these considerations, we suggest that the second-trimester ultrasound for fetal and placental measurements should be offered routinely, and additionally to detect anomalies following an opt-in system at the same time.Notwithstanding a lower rate of access to healthcare amongst immigrant women [21, 22], surprisingly, in our study non-western women with a non-Dutch background were more likely to have a CT compared to women from Dutch origin (respectively 24% and 22%). Contrary to our findings, Fransen et al. found a lower CT uptake among non-western women (around 12%) [13]. The differences in results could probably be find in a different study design. Fransen et al. used data of one specific Medical Diagnostic Centre in a high density immigrant area, and in our national study, we collected data by purposive sampling; furthermore, the percentage non-Dutch women in our sample was lower compared to the non-Dutch

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pregnant population and the other study (respectively 17% and 34%) [13]. Also surprisingly, in our study non-western women with a non-Dutch background with limited proficiency in Dutch were more likely to have a CT. An explanation of the higher uptake could be that the women did not have an adequate understanding of the CT [42]. A practical implication of inadequate understanding of the tests indicates that caregivers should make sure that all clients fully understand the information about the screening tests. In addition to other plausible reasons, ninety-eight percent of the non-western women with a limited proficiency in Dutch were from the first generation and it could be that raising an disabled child may be viewed as complicating already complex lives and may be expensive. On the other hand, non-western women with limited proficiency had a significantly lower FAS uptake compared to non-western women with excellent proficiency (74% and 89% respectively). An explanation why more non-western women with limited Dutch proficiency choose early screening but fewer choose second-trimester screening could be found in the religious background. More than 50% of the non-western in our study were Muslim and from a religious perspective, Muslim women may prefer earlier screening because termination of pregnancy in the case of confirmed serious anomalies is permissible up to the 120th day after conception, that is at 19 weeks’ gestation, but not later in pregnancy [18, 43, 44].Finally, a remark on recent developments in prenatal anomaly screening. Since April 2014, the non-invasive prenatal test (NIPT) is implemented in the Dutch prenatal anomaly screening in a nationwide study context [45]. The NIPT is offered after a positive result of the CT and before a diagnostic test such as an amniocentesis. Only women who are at high risk, e.g. have a child with Down’s syndrome in a previous pregnancy, can choose to have the NIPT without a CT; women who are 36 years or older must first have a CT. Therefore, understanding the determinants of the CT uptake takes on new importance. With the implementation of the NIPT, prenatal anomaly screening has now four steps: 1) CT, 2) follow up positive CT results with the NIPT, 3) follow up positive NIPT result with diagnostic tests which carry an associated 0.5% risk of miscarriage, and 4) when a positive finding is confirmed, to terminate the pregnancy before 24 weeks’ gestation or prepare for having a child with an anomaly.As far as we know, this is the first nationwide Dutch study to examine which socio-demographic factors were associated with the uptake of prenatal congenital anomaly screening tests in a low-risk population and to provide insight into the similarities and differences between the uptakes of the two screening tests. No data was collected on factors such as anomalies in previous pregnancies and family history of genetic diseases and this might bias the results; on the other hand, in general pregnant women at risk for congenital anomalies usually receive prenatal care from obstetricians from the start. Study participants were representative with respect to age and parity, but highly educated women and native Dutch women were overrepresented; the limitations of the study are discussed at length by Manniën et al. [24]. The high proportion of highly educated women may have resulted in over-reporting



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of the average CT and FAS uptake, while the overrepresentation of native Dutch women might have resulted in underreporting of the average CT uptake. The low response of some midwifery practices, the unequal distribution of the participants across practices and the possible differences in how the practices presented the tests may limit the generalizability of the findings [24]. Because of the small numbers of the secondary analyses among the subgroups, the results should be interpreted cautiously, and further research among western and non-western non-Dutch women with a larger sample size will be important to enhance the generalizability of the results. Additional research is also needed on the different ways in which the prenatal anomaly tests are presented.

Conclusion

Our study found that different socio-demographic factors were associated with the uptake of the CT and the FAS. Multiparity and some faiths were negatively associated with both screening tests and higher income was positively associated with both tests. Non-Dutch ethnic background and increasing age were positively associated with the CT uptake while there was a negative association with living in the eastern region. The level of education was positively associated with the FAS uptake. Also, limited proficiency in Dutch was positively associated with the CT uptake among non-western women. Our findings help to explain some differences between women choosing or declining early and late screening, but not the large variation in the test uptake among practices, nor between the Netherlands and other countries.

AcknowledgementsThe design and conduct of the study were approved by the Medical Ethics Committee of the VU University Medical Center Amsterdam. Privacy was guaranteed in accordance with Dutch legislation. Midwives’ anonymity was maintained by using anonymous practice identifiers.

FundingThis study was funded by the Midwifery Academy Amsterdam Groningen (AVAG) and by the Royal Dutch Organization of Midwives (KNOV) Scholarship 2012. The AVAG was involved in the study design; there was no involvement of the funders in the data analyses, manuscript preparation and publication decisions.

Competing interestsThe authors declare that they have no competing interests.

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Authors’ contributionsJG, JM and LM designed the study with the support of EK, HR and NV. JG, NV and JM conducted the statistical analyses and LM assisted with data interpretation. ES initiated and coordinated the DELIVER study. EH supervised the DELIVER study and the current study. JG drafted the manuscript with the advice and input of HR, and all authors read and corrected draft versions of the manuscript and approved the final manuscript.



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39. Gardosi J, Maduransinghe V, Williams M, Mailk A, Francis A. Maternal and fetal risk factors for stillbirth: population based study. BMJ 2013;346:f108.

40. Liu S, Joseph KS, Kramer MS, Allen AC, Sauve R, Rusen ID, Wen SW. Relationship of prenatal diagnosis and pregnancy termination to overall infant mortality in Canada. JAMA 2002;287(12):1561–1567.

41. Europeristat: Decrease of Dutch Perinatal Death (in Dutch). [http://www.europeristat.com/images/NL%20Peristat%20%20final%2026%2005%202013.pdf]

42. Fransen MP, Essink-Bot ML, Vogel I, Mackenbach JP, Steegers EA, Wildschut HI. Ethnic differences in informed decision-making about prenatal screening for Down’s syndrome. J Epidemiol Community Health 2010;64(3):262–268.



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43. El-Hashemite N. Genetic Malformation in Children, its Causes, and the Islamic View in Preventive Procedures. London: Dar Al-Hekma; 1995. pp. 105–131.

44. Albar MA. Ethical considerations in the prevention and management of genetic disorders with special emphasis on religious considerations. Saudi Med J 2002;23:627–632.

45. NIPT Consortium (non-Invasive Prenatal Testing) (in Dutch). http://niptconsortium.nl/

Chapter 3The role of religion in decision-making on antenatal screening

of congenital anomalies: a qualitative study amongst

Muslim Turkish origin immigrants

Gitsels-van der Wal JT, Manniën J, Ghaly MM, Verhoeven PS, Hutton EK, Reinders HS.

Midwifery 2014;30:297-302.

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Abstract

Objective: to explore what role religious beliefs of pregnant Muslim women play in their decision-making on antenatal screening, particularly regarding congenital abnormalities and termination, and whether their interpretations of the religious doctrines correspond to the main sources of Islam.

Design: qualitative pilot study using in-depth interviews with pregnant Muslim women.

Setting: one midwifery practice in a medium-sized city near Amsterdam participated in the study.

Participants: ten pregnant Muslim women of Turkish origin who live in a high density immigrant area and who attended primary midwives for antenatal care were included in the study.

Data collection and data analysis: to explore the role of religion in decision-making on antenatal screening tests, a topic list was constructed, including four subjects: being a (practising) Muslim, the view on unborn life, the view on disabled life and the view on termination. To analyse the interviews, open and axial coding based on the Grounded Theory was used and descriptive and analytical themes were identified and interpreted.

Findings: all ten interviewees stated that their faith played a role in their decision-making on antenatal screening, specific to the combined test. They did not consider congenital anomalies as a problem and did not consider termination to be an option in case of a disabled fetus. However, the Islamic jurisprudence considers that termination is allowed if the fetus has serious abnormalities, but only before 19 weeks plus one day of gestation.

Key conclusions: religious convictions play a role regarding antenatal screening in pregnant Muslim women of Turkish origin. The interviewees did not consider a termination in case of an affected child. Women were unaware that within Islamic tradition there is the possibility of termination if a fetus has serious anomalies. Incomplete knowledge of religious doctrines may be influencing both decisions of antenatal screening and diagnostic tests uptake and of terminating a pregnancy for fetuses with serious anomalies.

Implications for practise: Counsellors should be aware of the role of religious beliefs in the decision-making process on antenatal screening tests.

Keywords: antenatal diagnosis; combined test; congenital anomalies; Islam.


Religion in decision-making on antenatal anomaly screening amongst Muslim Turkish immigrants

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Introduction

Antenatal screeningSince 2007, antenatal screening of congenital anomalies has been offered to all pregnant women in the Netherlands. Antenatal screening follows an opting in system and therefore the intended aim is to offer the option of informed choice to pregnant women who want to become informed about the health of their future child (RIVM, 2007; Oepkes and Wieringa, 2008). The aim of the antenatal screening tests is to detect possible congenital abnormalities. If anomalies are detected, there are two options: focusing antenatal care on the health of the fetus, or terminating the pregnancy before 24 weeks of gestation. In the Netherlands, antenatal screening includes two non-invasive tests: the combined test for determining the possibility of Down syndrome at 12 weeks of gestation, and the second trimester ultrasound (STU) for detecting fetal abnormalities at 20 weeks. Although both tests are part of a population-screening programme, they are not offered on the same basis. The STU is free for all women; the combined test is only free for women aged 36 years or older. In the Netherlands, more than 80% of the women start antenatal care in primary care midwifery practices and these pregnant women are informed and counselled by midwives (Wiegers, 2009). Several factors such as age, family life, personal experience, socio-economic status, ethnicity and religion, may influence the decision whether or not to participate in the antenatal screening-programme (Van den Berg et al., 2005; Fransen et al., 2007; Fransen et al., 2010; Maxwell et al., 2011; Tischler et al., 2011; Bakker et al., 2012; Yu, 2012). For pregnant women and their partner implicit moral questions regarding antenatal screening tests include: what is your personal view on the value of life, of unborn life and of disabled life and what is your view on termination in case of an affected fetus? People’s responses to these questions will to an extent be influenced by their religion (Van den Berg et al., 2005; Fransen et al., 2007; Seror and Ville, 2009). This paper aims to provide in depth information about influence of religion in decision-making on antenatal screening tests according to pregnant Turkish Muslim women living in the Netherlands.

Islam in generalMigrants with an Islamic background are a growing part of the population in the Netherlands as well as in many other Western countries. Worldwide, Islam has two main streams: Sunni (87-90%) and Shia (10-13%) (Miller, 2009). There are four major directions, the so-called law schools, within the Sunni stream: Hanifi, Maliki, Hanbali and Shafi. These four law schools have no fundamental differences, but evidence of small difference exists (Shadid and Koningsveld, 2008). The Hanifi school of law predominate in Turkey, Pakistan and India (Atighetchi, 2007; Ghaly 2008, JRDH). Migrants from Turkey are the largest minority with an Islamic background

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in the Netherlands; 95% stated to be a Muslim (Dutch Statistics, www.cbs.nl). After the Hannifi, the Alevi, part of Shia, is estimated to be the second largest religious group in and from Turkey. The Alevits are characterized by a moderate humanist philosophy that allows human beings a place aside of God, and teaches human responsibility in all domains of life. They emphasize religious tolerance and support the separation between religion and the state (White and Jongerden, 2003). There are different parameters to describe a Muslim. On the theological level, a Muslim is someone who witnesses that there is no other god than God and that Mohammed is Allah’s prophet. Being a practicing Muslim can be described on many different juridical levels, of which the best known is that someone keeps the devotional rules of the Shari’a as praying five times a day, fasting during Ramadan, charitable giving and a pilgrimage to Mecca at least once in a lifetime. Because of the methodology of our study, in this paper we choose the anthropological level of being a practicing Muslim: a practicing Muslim is someone who described himself or herself as a practicing Muslim. The Qur’an and the Hadith, a collection of sayings, acts, tacit approvals or disapprovals ascribed to the prophet Mohammed, hardly give definitive instructions with direct relevance to bioethical issues in the context of antenatal screening tests. The relevant sources emerged from the contemporary Councils of Islamic Law (Fiqh) whose judgments are based on the main sources (Qur’an and Hadith), and the early schools of law (Ghaly, 2008). These Councils of Fiqh issue counsel for daily life in the form of non-binding ethical advice (fatwas) (Beck and Wiegers, 2008). Bioethical issues like termination of pregnancy have been elaborated by for example the Islamic Organization for Medical Science (IOMS) and the European Council for Fatwa and Research (ECFR). Because they are grounded in the classic sources, the statements of the Councils of Fiqh have a a authority and respectability for the average Muslim (Ghaly 2007).The Islamic concept of a human being is important in the context of the value of living with the congenital abnormalities targeted by antenatal screening. Central to the Islamic concept of the human being is the notion that all humans are born as Muslims, but they are raised according to the faith of their parents (Driesen, 2004). With regard to human differences, Islam teaches that all people are equal in the eyes of God, regardless of faith, skin colour, or social class (Sardar, 2007), and that life is sacred even when it is of ‘poor’ quality (Daar and Khitamy, 2001). Every person is born pure and blameless and, as such, every person is perfect in his/her initial conception (Bazna and Hatab, 2005). It is important to know that God creates unborn life stage after stage, and so human life includes the time before birth as part of the creation process [Sũra 23:12-14] (Koran). Within the process of human creation “ensoulment” is a decisive moment, when God breathes spirit into the fetus [Sũra 38:71,72] (Koran). According to the Shari’a, the fetus becomes a person from the moment of ensoulment (Rispler-Chaim, 1993). The most common understanding is that the moment of ensoulment takes place 120 days after the conception, whereas a minority of leading Islamic scholars teaches that ensoulment occurs after 40 days (Atighetchi, 2007).



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Islam and aspects of Antenatal ScreeningWith regard to congenital anomalies, Islamic sources emphasize that disabled individuals have to be comforted by love and care (Ghaly, 2007). Disabilities or anomalies viewed in the Quran are neither a curse nor a blessing; they are simply part of the human condition (Bazna and Hatab, 2005). Islamic sources do not teach that congenital abnormalities represent a divine punishment for the sin of one’s parents (Ghaly, 2007; Beck and Wiegers, 2008). Besides, Sunni Islamic scholars (muftis) rather give advice about family planning and contraception than about fetuses with anomalies (Rispler-Chaim, 1999).Within the Islamic beliefs, there are a few valid legal reasons for terminating a pregnancy. The most important reason, and for some Muslim jurists the only reason, is when the health of the mother is in serious danger and that continued pregnancy may even incur maternal death (Rispler-Chaim, 1993). A majority of modern Islamic jurists also allow the option of termination when the fetus has serious congenital abnormalities (Rispler-Chaim, 1993; Atighetchi, 2007; Ghaly, 2008). However, in these cases termination is permitted only before the moment of ensoulment (El-Hashemite, 1995; El-Hashemite, 1997). After that moment, it is seen as a crime against a living person with the exception of the situation where the mother’s health is in danger (Rispler-Chaim, 1993).In 1990, the approval of termination before the 120th day in case of congenital abnormalities was officially confirmed in Fatwa number 4 of the Islamic jurisprudence council of Mekkah Al Mukaramah (Albar, 2002). This fatwa gives permission and is not a recommendation. Before termination, the anomalies have to be confirmed by a couple of specialised and competent doctors, preferably Muslim doctors (Al-Aqueel, 2005; Rispler-Chaim 2007). A hundred and twenty days after conception corresponds to 19 weeks plus one day of gestational age.With regard to decision-making, in Islam every human being has a free will and is thus responsible for his or her own actions. This means that every believer has a duty to explore the teachings of the Qur’an and the Hadith in order to arrive at practical conclusions with regard to how to live and act, rather than following uncritically what one is told (Bazna and Hatab, 2005).

Research questionReligious background and individual perspective on the value of unborn life and disabled life can influence the decision-making process on antenatal screening of congenital anomalies. Pregnant Muslim women generally do not opt for the combined test, often claiming that their faith does not allow termination (Neter et al., 2005, Fransen et al., 2007). On the other hand, Lind (2008) describes a few cases with and without termination of pregnancy after a confirmed serious anomaly of the fetus. In view of these discrepancies, this study examined in depth what role religious beliefs of pregnant Muslim women play in their decision-making on antenatal screening. Furthermore, we explored how these women interpret their religious

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beliefs with regard to participation in antenatal screening and termination of pregnancy and whether their interpretations correspond to the main sources of Islam. Because migrants from Turkey are the largest minority with an Islamic background in the Netherlands, this exploratory study was undertaken with pregnant Muslim women from Turkish descent.

Method and Recruitment

Data collectionIn order to explore the role of religious beliefs with regard to the decision-making process for an uptake of antenatal screening tests, 10 in-depth interviews were held with pregnant Muslim women from Turkish descent. This qualitative pilot study provides insight into opinions and perspectives of pregnant Muslim women regarding their decision-making process. Data were collected in January and February 2008. Informed consent was obtained from all participants. The study was approved by the Medical Ethics Committee of VU University Medical Centre Amsterdam, the Netherlands.

ParticipantsParticipants for the study were recruited by means of a convenience sample from a population of pregnant women, visiting the midwifery practice in a medium-sized city near Amsterdam, which has a relatively large proportion of clients from ethnic minorities. First, a purposive subpopulation was selected fulfilling three pre-set criteria. First of all, we focused on pregnant women who themselves were born in Turkey, or were from Turkish descent through (one of) their parents, and who were able to speak Dutch reasonably well. Furthermore, only women who were at least 20 weeks pregnant were included to ensure that the legal period for antenatal testing had passed and that the interviews could not influence the women’s decision-making process. Lastly, only women who were pregnant for the first time since the introduction of the antenatal screening-programme were included, thus this was the first time they had to make a decision on the antenatal screening tests. There was no restriction regarding the women’s age, parity or Islamic stream. Ten women were selected on a first come, first served basis. The sample size of ten was chosen because it was expected to achieve data saturation.

Procedure All interviewees were informed about the study by their midwife and invited to participate. The interviewer, also an expert midwife and researcher, approached the women after consultation in the clinic. The interviewer was also a midwife at the practice but did not provide care to the participants as she was on study leave during the study period. The interviews took place at the women’s homes without other family members being present, so that the women could



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speak openly of their own ideas and opinions. Each interview lasted between half an hour and one hour. With permission of the interviewees, the in-depth interviews were digitally recorded and transcribed verbatim afterwards.

InstrumentsIn accordance with important items of decision-making on antenatal screening derived from literature, a topic list was formulated (Table 1). The two core issues of antenatal screening tests are whether people want to be informed about the possibility of having a disabled child, and if so, whether they would consider a termination of the pregnancy in the case of a child with Down syndrome or a seriously affected child with structural anomalies. With this and the role of religion in mind, the topic list focussed on four points: to what extent the women considered themselves as Muslims; their decision-making process; their view on unborn life and on disabled life; and their view on termination of pregnancy.

Table 1. Contents of the topic list used for the interviews

Topics1. Was it difficult for you to make a decision whether or not to do the tests?2. How do you describe your religious background and its role in your daily life?3. Did your faith influence your choices regarding antenatal screening?4. As a Muslim woman, what is your perspective on termination?5. Can someone with Down syndrome (or a physical/mental disability) be a good Muslim, or a good

person?6. Are you satisfied with the decision you made about the combined test and the second trimester

ultrasound (STU), or would you have made another decision?7. Do you think that a midwife or obstetrician must know about the faith of Muslim pregnant wom-

en in general when informing them about antenatal screening?

Analysis planWhen all interviews were completed, the transcripts were analysed using thematic analysis. This approach is concerned with capturing and interpreting substantive meanings in the interview results, using an iterative process of open and axial coding, whereby the transcripts were read to identify emerging themes, based on the Grounded Theory approach (Glaser and Strauss, 1967). During this process, sensitizing concepts were noted according to the topic list, as being a (practising) Muslim, testing, terminating pregnancy and disability. After this first stage, descriptive and analytical themes were identified and interpreted (Thomas and Harden, 2008).

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Findings

Table 2. Characteristics of the interviewees

Interviewees Generation of immigration

Number of children

Religious group Uptake CT/STU* Age

1 First 0 Alevit +/+ 252 First 2 Alevit +/+ 373 First 0 Sunni -/+ 204 Second 0 Sunni -/+ 265 First 0 Sunni -/+ 306 Second 1 Alevit +/+ 257 Second 0 Sunni +/+ 228 First 0 Sunni -/+ 229 First 1 Sunni -/+ 3010 Second 0 Sunni -/+ 26

*CT=combined test, STU=second trimester ultrasound

The characteristics of the women who were interviewed are described in Table 2. Four of the ten interviewees had done the combined test; one Sunni woman and the three Alevit women. None of the combined tests showed an increased chance of having a child with Down, which meant that none of them had an amniocentesis. All ten interviewees had done the STU. One woman had a serious congenital abnormality herself, a serious form of scoliosis, and the STU revealed that her child would be born with the same condition. Six themes arose from the interviews: being a (practising) Muslim, terminating pregnancy, disability, family planning, decision-making and the counsellor’s knowledge of Islam.

A. Being a (practicing) MuslimAll women in the study described themselves as Muslim. Four women described themselves as not practicing Muslims. According to the women, the essence of being a Muslim is to be a good person: You must have a clean heart [woman 7]. Four women stressed that as Muslim, they must judge whether a particular behaviour or act is right or wrong. All women highlighted the importance of their belief, regardless of their parity, their Islamic stream (Sunni or Alevit) or whether they were a first or second-generation immigrant.

“It is very important for me to be a Muslim, my faith has the first priority in my life, it is very important to me.” [woman 7]

“I can rely on my belief if I have a hard time, it gives me strength even if I don’t find the answers.” [woman 5]

“It is important, it is my common lifestyle.” [woman 10]



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B. Terminating pregnancyBoth ultrasound-screening tests are non-invasive tests and imply the legal and medical option of a termination in case of a positive test result. The responses from the women suggest that none of them considered terminating the pregnancy. The four women who did the combined test only wanted to be prepared in case of Down syndrome:

“Even if my child would have Down Syndrome, I do not consider a termination, but for me it was better to do the combined test to be prepared in case of Down Syndrome.” (Woman 7, the Sunni who did the combined test)

Regarding termination, eight women stated that Islam forbids termination of a pregnancy, and one of them said that it is a terrible sin:

“Certainly it is a sin. You can do other forbidden things, but this is something about life. Actually, I didn’t want this child, but I never thought about a termination.” [woman 6]

Talking about the reasons for permitting a termination in Islam, the interviewees mentioned the following possibilities: when pregnancy endangers the mother’s health, or when a woman was raped. Two women said that termination is permitted when the fetus is disabled or has Down’s syndrome, but they did not consider a termination themselves; the other women were convinced that, from their religious point of views, it is improper to terminate a pregnancy in case of an affected fetus. Six women said that the Koran forbids termination, and one said that God will punish the one who perpetrates a termination.Three women made a link between termination and divine destiny. In their views, life follows God’s plan. Terminating a pregnancy means that you take destiny into your own hands.

C. DisabilityAll of the interviewees believed that people with a disability are the same as ‘healthy’ people in the eyes of God. The women called several possibilities for the wise purpose that God could have for people with disabilities:

“I think, it is given by God as a test for yourself to see how you handle it.” [woman 2]

“Some people are disabled, and we think that it is a test for the parents that you have to go through and at the end there will be a recompense.” [woman 4]

“Am I too good, that God also gives me this?” [woman 5, knowing that her child will have the same abnormality as herself]

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D. Family planningFour women emphasized that it is a woman’s responsibility to prevent pregnancy if she doesn’t want to have a baby, and they suggested or implied the opportunity of family planning. In speaking of contraception, all women used the term ‘protection’ instead of ‘contraception’. The woman with the congenital abnormality went to see her family doctor before she got pregnant to ask about the risk of getting a child with the same abnormality:

“The doctor didn’t answer my question, but asked me: ‘Do you want to abort the child if the child will have the same abnormality?’ I told him ‘no’. ‘In that case it is not necessary to know that chance, because you will not opt for termination anyhow.’” [woman 5]

E. Decision-makingWhen discussing the option to have the combined test, nine interviewees indicated that their faith contributed explicitly in their decision-making process, while one woman said that her faith played a more implicit role. In case of the STU, six interviewees answered that faith contributed in their decision-making process. Remarkably, three women who did the STU said that at the time of the test they had not been aware of the aim of the STU particularly the detection of congenital abnormalities. One woman thought it was obligatory to take this test. Although both screening tests imply the option of a termination in case of a positive test result, the responses from the women suggest that although they did the test(s) none of them had in mind the option of terminating the pregnancy.Two young interviewees (20 and 22 years old) experienced the decision-making on antenatal screening as being difficult, especially regarding the combined test, and were anxious during the weeks after the counselling. In retrospect, most interviewed women were still satisfied with the decision they made. Two women were uncertain and one said:

“In fact, I really don’t know, on one hand I would say yes, on the other hand no. Interviewer: ’is this because of the abnormality of your unborn child?’ Yes, I am constantly worried.” [woman 5]

F. Counsellor’s knowledge of Islam Five women were of opinion that it is not important for a counsellor to have knowledge of the Islam regarding antenatal screening. One woman had no opinion; the other four found knowledge of the Islam important, as one of them said:

“They have to understand what our faith is about. They have to know what the meaning of life is. What life means to me.” [woman 10]



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Discussion

The aim of this study was to explore the role that religious beliefs of pregnant Muslim women play in their decision-making on antenatal screening tests, and how these pregnant women interpret the religious doctrines with regard to termination of pregnancy. All women stated to be a Muslim and six of them stated to be a practicing Muslim. The faith of the ten interviewed Muslim women appeared to be part of their daily life and it played a role in their decision-making concerning their participation in the combined test. Regarding participation in the STU, some of the interviewees indicated that their faith played a role in the decision-making process, although not all interviewees appeared to understand that a primary aim of the STU is screening for congenital anomalies. The interviewees did not act in the same way; the Alevit women and one Sunni woman who all wanted to be prepared in case of Down syndrome participated in the combined test, but none of them considered a termination in case of a disabled child. This indicates that Muslims with the same country of origin can have different perspectives on life and that counsellors of antenatal screening have to approach women as individuals with a personal view on life. Nearly all of the interviewees did not consider having a disabled child to be a problem. These women did not regard terminating the pregnancy as an option if the fetus would be disabled because of their faith and were of opinion that termination is only permitted in case of rape or when the mother’s life is in danger. Islamic literature confirms the latter two reasons, and in addition, some Muslim scholars are of the opinion that terminating pregnancy is allowed if the fetus has serious abnormalities, but only if it is performed before the 120th day after the conception (Rispler-Chaim, 1993; Atighetchi, 2007; Ghaly, 2008). Most of the interviewed women did not demonstrate any awareness of the contents of the fatwa pertaining to termination of pregnancy. An overwhelming majority of Islamic scholars are of opinion that termination is in principal forbidden, unless there is a legal reason; this is possibly the reason why the interviewed women try to avoid a termination as much as possible. It is perhaps not surprising that Muslim pregnant women have little or no knowledge of Islamic jurisprudence; it has been argued that the average Muslim is not familiar with contemporary Islamic rulings on bioethical issues (Daar and Kitamy, 2001). Furthermore, it could be problematic for people to differentiate between their religious and cultural beliefs and the knowledge of what is permissible according to the religion of Islam (El-Hashemite, 1997).

This small exploratory study suggests that religious convictions play a role for Turkish pregnant women in decision-making with regard to antenatal screening. Similar findings were reported by Fransen et al. (2007) based on focus group discussions with pregnant Turkish, Surinamese and Dutch women. Furthermore, De Graaf et al. (2010) observed that 14.8% of pregnant women declined the combined test for religious reasons, and termination of a fetus with

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Down’s syndrome was refused significantly more often by non-Western immigrants than by autochthon families (30% versus 10%). Another study showed that women who did not consider termination to be an option in case of an affected child, more often stated that religion was important for them (Seror and Ville, 2009). By using in depth interviews to explore women’s perceptions of the possibility of having a disabled child and their feelings with regards to uptake of antenatal screening we report findings that contradict the conclusion of a study in Lebanon by Usta et al. (2010). They suggested that religion does not play a significant role in decision-making on antenatal screening based on the observation that there was a comparable acceptance rate of antenatal screening among Muslims, Christians and Druze (Usta et al., 2010). The comparable acceptance rate among Muslims, Christians and Druze is perhaps not surprising because these three religions have a quite similar view on terminating a pregnancy as well as the fact that in local culture, different religious groups assimilate to each other.

The official aim of the antenatal screening-programme of the Dutch government is to enable informed choice for people who seek information about the health status of their future child. The fact that the antenatal screening-programme is available for the entire population of pregnant women indicates that the Dutch government encourages people to participate in this programme. When congenital anomalies are detected, antenatal care will focus on the health of the fetus or the pregnancy may be terminated. In the Netherlands, the STU is offered around the 20th week of gestational age and termination is legal if it is before the 24th week. However, as according to Islam, Muslim women are not able to terminate the pregnancy after 19 weeks plus one day gestation. In Canada and the United Kingdom, the STU takes place around the 18th week (SOGC, 2009; NICE, 2010). In order to give Muslim women in the Netherlands the opportunity to choose to terminate pregnancy because of congenital abnormalities, revision of the timing of the STU may be necessary.

There are at least two findings of this study that are relevant to counsellors of antenatal screening. Firstly, the aim of the STU was not clear to all interviewees. This means that there was not really proper informed consent and that counselling on antenatal screening should be improved. Misunderstanding of the aim of STU has serious consequences, as it involves choices regarding termination of pregnancy or bringing up a disabled child. Secondly, two interviewees of 20 and 22 years old were anxious during the weeks after the counselling, which is remarkable because the chance to give birth to a child with Down’s syndrome is very low for young women (RIVM, 2009). Counsellors may need to change the way they provide information to these women.



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A limitation of this qualitative set up is the small and selective sample size, limiting the generalizability of the findings. Moreover, one must keep in mind that only Muslim women from Turkish origin were interviewed. Other Islamic women, for example from Moroccan origin who belong to the Maliki, the second largest minority group in the Netherlands might have different views and make other decisions as they adhere to different schools of Islamic jurisprudence. However, this descriptive pilot study provides insight into the decision-making process on antenatal screening of the interviewed Muslim women and this could be the starting point of future studies with other Islamic women and other religions. A strength of the study is the inclusion of Muslim women from a variety of age groups, parity and who are first and second generation in the Netherlands.

This study shows that religious convictions play a role regarding antenatal screening in our study population of pregnant Muslim women of Turkish origin in the Netherlands, especially with regard to the combined test and to a lesser extent to the STU. Women included in our study were unaware that there are statements of Islamic scholars within Islamic tradition that allow terminating pregnancy before 19 weeks plus one day of gestational age if the fetus has a serious congenital abnormality. However, even with that knowledge, the timing of the STU at around 20 weeks of gestation in the Netherlands limits, the option of termination of a congenitally abnormal fetus for these women.

This pilot study resulted in several recommendations for antenatal care and for future research. In jurisdictions that include Muslim women as part of the pregnant population, the STU should be offered prior to the 19th week of pregnancy. Furthermore, it will be interesting to examine whether the test uptake differs between clients from various religious backgrounds. Additionally, future research into the way midwives counsel clients regarding antenatal screening might improve the counselling and with that the understanding of the aim of antenatal screening by pregnant women. Ideally, this is assessed objectively by videotaping the counselling. Finally, as religion seems to play a role in decision-making regarding antenatal screening, the question arises to what extent counsellors actually pay attention to the religious background of clients during counselling.

Funding No specific funding.

Conflict of interest statementNone declared.

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Ghaly M.M., 2007. Islam en handicap: praktijkthema’s en islamitische ethische opvattingen (in Dutch). Tijdschrift voor Gezondheidszorg & Ethiek 17 (2), 40-45.

Ghaly M.M., 2008. Physical and Spiritual Treatment of Disability in Islam: Perspectives of Early and Modern Jurists. Journal of Religion, Disability & Health 12 (2), 106-109.

Glaser B.G., Strauss A.L., 1967. The discovery of grounded theory: strategies for qualitative research. Aldine, Chicago.

Graaf G. de, Os C. van, Borstlap R., Graaf E. de, 2010. Ervaringen van ouders met prenatale screening. Down+Up 91, 37-48. (in Dutch)

Koran, translated by Yusuf Ali. Lind J., 2008. Als de imam beslist. Medisch Contact 42, 1719-1721. (in Dutch)Maxwell S., Brameld K., Bower C., Dichinson J.E., Godblatt J., Hadlow N., Hewitt B., Murch A., Murphy

A., Stock R., O’Leary P., 2011. Socio-demographic disparities in the uptake of prenatal screening and diagnosis in Western Australia. Australian and New Zealand Journal of Obstetrics and Gynaecology 51 (1), 9-16.

Miller T., ed., 2009. Mapping the Global Muslim Population: A Report on the Size and Distribution of the World’s Muslim Population, Pew Research Center. http://pewforum.org/newassets/images/reports/Muslimpopulation/Muslimpopulation.pdf, retrieved 2009-10-08.

Neter E., Wolowelsky Y., Borochowitz Z.U., 2005. Attitudes of Israeli Muslims at Risk of Genetic Disorders towards Pregnancy Termination. Community Genetics 8, 88-93.

NICE clinical guidelines, 2010. CG62 Antenatal Care. http://publications.nice.org.uk/antenatal-care-cg62/guidance#screening-for-fetal-anomalies

Oepkes P., Wieringa J., 2008. Recht op prenatale kennis; 20-weken echo maakt weloverwogen keuze mogelijk. Medisch Contact 31/32, 1296-1297. (in Dutch)

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Rispler-Chaim V., 1999. The Right not be born: Abortion of Disadvantaged Fetus in Contemporary Fatwas. Muslim World Vol. LXXXIX, no.2.

Rispler-Chaim V., 2007. Disability in Islamic Law. Springer, Dordrecht.RIVM website: www.rivm.nl/zwangerschapsscreening/downscreening/kans_op_down/ (2012)RIVM Roadmap of prenatal screening 2007.Sardar Z., 2007. Wat geloven moslims? Donker, Rotterdam. (in Dutch)Seror V., Ville Y., 2009. Prenatal screening for Down’s Syndrome: women’s involvement in decision-

making and their attitudes to screening. Prenatal Diagnosis 29, 120-128.Shadid W.A.R., Koningsveld P.S. van, 2008. Islam in Nederland en België. Peeter, Leuven. (in Dutch)SOGC clinical practice guideline, 2009. http://www.sogc.org/guidelines/documents/gui223CPG0903.

pdf Thomas J., Harden A., 2008. Methods for the thematic synthesis of qualitative research in systematic

reviews. BMC Medical Research Methodology 8, 45. doi: 10.1186/1471-2288-8-45.Tischler R., Hudgins L., Blumenfeld Y.J., Greely H.T., Ormond K.E., 2011. Noninvasive prenatal diagnosis:

pregnant women’s interest and expected uptake. Prenatal Diagnosis 31 (13), 1292-1299.Usta I.M., Nassar A.H., Abu-Musa A.A., Hannoun A., 2010. Effect of religion on the attitude of primiparous

women toward genetic testing. Prenatal Diagnosis 30 (3), 241-246.White P.J., Jongerden J., (Eds.) 2003. Turkey’s Alevi Enigma: A Comprehensive Overview. Brill, LeidenWiegers T.A., 2009. The quality of maternity care services as experienced by women in the Netherlands.

BMC Pregnancy Birth 9, 18. doi: 10.1186/1471-2393-9-18.Yu J., 2012. A systematic review of issues around antenatal screening and prenatal diagnostic testing

for genetic disorders: women of Asian origin in western countries. Health and Social Care in the community 20 (4), 329-346.

Chapter 4A qualitative study on how Muslim women of Moroccan descent

approach antenatal anomaly screening

Gitsels-van der Wal JT, Martin L, Manniën J, Verhoeven P, Hutton EK, Reinders HS.

Midwifery 2015;31:43-49.

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Highlights

- Motherhood was the lens through which participants approached anomaly tests- The Combined Test was perceived as a test and approached with hesitations- The Fetal Anomaly Scan was mostly perceived as a scan to see and connect with the

fetus- Some Muslim women know the fatwa about termination in case of serious anomalies- Women underlined the importance of making their own decisions; they felt

accountable.


How Muslim women of Moroccan descent approach antenatal anomaly screening

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Abstract

Objective: to extend the knowledge on Muslim women’s approach of antenatal anomaly screening.

Design: qualitative interview study with pregnant Muslim women from Moroccan origin.

Setting: one midwifery practice in a medium-sized city near Amsterdam participated in the study.

Participants: Twelve pregnant Muslim women who live in a high density immigrant area and who attended primary midwives for antenatal care were included in the study.

Data collection and data analyses: We conducted open interviews with pregnant Moroccan Muslim women for the purpose of studying how they made decisions about antenatal anomaly screening. We used a thematic analysis approach.

Findings: Women experienced the combined test as ‘a test’ that could identify potentially anomalous infants, and could result in being offered termination of the pregnancy; a fact that resulted in their extensive deliberations and hesitation about the test uptake. Only two women had the Combined Test. Conversely, women opted for the Fetal Anomaly Scan and saw it as ‘only an ultrasound to see the baby’. Above all, women emphasized that whether or not to participate in antenatal anomaly tests was their own, individual decision as ultimately they were accountable for their choices. All women, including nulliparous women, viewed becoming pregnant as the point of becoming a mother – and considered prenatal screening through the lens of motherhood.

Key conclusions: Motherhood was the lens through which the decision to participate in antenatal anomaly screening was approached. Religious beliefs influenced values on termination and disability and were influential in the deliberations for prenatal testing. Combined Test but not Fetal Anomaly Scan was considered to be a prenatal screening test.

Implications for practice: counsellors should have knowledge of the different Islamic beliefs about -the latest possible day for- termination and an awareness that Muslim women make their own conscious choices, also beyond Islamic rulings. Keywords: Islam, immigrants, antenatal diagnosis, congenital anomalies, decision-making, motherhood

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Introduction

The aim of counselling for antenatal anomaly screening is to engage pregnant women or couples in making reproductive, informed choices (RIVM, 2011). Informed choices are based on relevant knowledge, consistent with the decision-maker’s values and behaviourally implemented (O’Connor & O’Brien Pallas, 1989; Marteau et al., 2001). Research into the practice of antenatal screening shows that lower rates of informed choice were found among women of non-western ethnic minority groups and socio-economically disadvantaged women; this is partly because of insufficient knowledge, and partly because their choices did not reflect their attitudes towards screening (Dormandy et al., 2005; Fransen et al., 2010a). Women’s attitudes and values towards termination are based on their philosophy of life and in particular of disabled life and play a role in their decision-making around antenatal screening and termination of pregnancy. Several studies underline the importance of religion on these decisions (Van den Berg et al., 2005; Neter et al., 2005; Ahmed et al., 2006; Fransen et al., 2007; Garcia et al., 2008a; Fransen et al., 2010b; Gitsels-van der Wal et al., 2014a). For example, Muslim women’s view on termination seems to weigh heavily regarding the decision of whether or not to participate in antenatal anomaly screening (Neter et al., 2005; Fransen et al., 2007; Fransen et al., 2010b; Gitsels-van der Wal et al., 2014a). See Appendix for detailed information about antenatal anomaly screening.

Research into the practice of antenatal counselling shows that a substantial proportion of women and partners prefer to get decision-making support during counselling (Dormandy et al., 2005; Garcia et al., 2008b; Fransen et al., 2010a; Ahmed et al., 2012; Aune and Moller, 2012; Martin et al., 2013) and that they do not perceive this to be in conflict with making an autonomous choice (Garcia et al., 2008b; Ahmed et al., 2012; Aune and Moller, 2012; Martin et al., 2013;). However, a recent study showed that clients perceived a lack of decision-making support (Martin et al., 2013). To better enable pregnant women to make informed choices about antenatal screening, counsellors should explore clients’ deliberations. Within these deliberations counsellors should explore the role of clients’ religion or philosophy of life regarding decision-making (Pivetti et al., 2012; Crombag, 2013). Women with a Muslim background constitute a substantial, growing part of the population of pregnant women in many western countries. A year after antenatal anomaly screening was implemented in the Netherlands, we conducted an exploratory qualitative study among pregnant Muslim women of Turkish origin. This study focussed on the role of religious beliefs in decisions around whether or not to participate in antenatal anomaly screening and demonstrates that women’s religious beliefs played an important role in decision-making on the Combined Test (CT), but played a limited role in decision-making on the Fetal Anomaly Screening (FAS). Their views on termination and disability, based on religious convictions, were key in their decision-



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making on CT. Most women would not consider termination if an anomaly was diagnosed, and most women were unaware of the possibility of termination within Islamic tradition should their fetus be diagnosed with a serious anomaly (Gitsels-van der Wal et al., 2014a).

In the Netherlands, migrants from Turkey and Morocco are the two largest Islamic minorities (Statline). The Turkish and Moroccan populations belong to different Islamic schools, respectively the Hanifî school and the Mâlikî school (Atighetchi, 2007; Ghaly, 2008). These two Islamic schools have small differences in opinions about termination; the most important difference is the latest possible day of termination if a fetal anomaly is diagnosed (Atigethchi, 2007). In general, scholars from the Hanifî school permit a termination till 120 days after conception, whereas most scholars of the Maliki school permit a termination till 40 days after conception (Atighetchi, 2007). From the obstetrical perspective, which typically calculates pregnancy duration starting from the first day of the last menstrual period that means two weeks before conception, 120 days after conception is a gestational age of 19 weeks plus one day; 40 days after conception corresponds with seven weeks and five days of gestation. More detailed information about the Islamic schools and Islamic bioethics is provided in our previous work (Gitsels-van der Wal et al., 2014a).

Women have become increasing familiar with antenatal screening tests in the five years since testing was first implemented. The aim of this study was to extend the knowledge on Muslim women who belong to different Islamic schools in terms of their approach to antenatal anomaly screening. Therefore, we undertook to study the views of Muslim women of Moroccan origin in terms of antenatal screening and to compare our findings with our prior research on Muslim women of Turkish origin.

Method and recruitment

Data collectionWe conducted open interviews in Dutch with pregnant Muslim women of Moroccan descent between December 2011 and May 2012 for the purpose of studying how they made decisions about antenatal anomaly screening. Informed (written) consent was obtained from all participants. The Medical Ethics Committee of the VU University Medical Centre, Amsterdam approved the study.

Participants Participants were recruited using a purposive sample from a population of pregnant women from a medium-sized city near Amsterdam; the participants received antenatal care at a midwifery practice, with a relatively large proportion of clients from ethnic minorities. The

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interviewees were selected according to three inclusion criteria: women, who were born in Morocco or whose parents were born there, and who had a reasonable command of Dutch. To ensure that the interviews could not influence the women’s decision-making about antenatal screening we only included women who were past the cut-off time for the FAS. We planned to interview until saturation was reached, which in a homogeneous population typically requires a small number of 12 or so (Guest et al., 2006).

Procedure Eligible participants were informed about the study by their midwives. Next, one of the researchers called the women to ask whether they agreed to be interviewed on the topic, and when consent was provided an appointment was made. The interviews took place without other family members present, so that the women could speak openly. The interviewer was a midwife in the recruiting practice; independence of the interviewer was ensured because she was on study leave at the time of the interviews and the participants were not her direct clients. With permission of the interviewees, the interviews were digitally recorded and transcribed verbatim.

InstrumentsWe used the same topic list as used for our previous study among Turkish pregnant women (Gitsels-van der Wal et al., 2014a) but focused on only three topics on the list:

1. Women’s approach to antenatal anomaly screening;2. The value of life including unborn life and disabled life; 3. Women’s views on termination of pregnancy.

Analysis planThe transcripts were coded and analysed using Thematic Analysis as described by Braun and Clarke (2006). In order to reach inter-subjectivity of the results, two researchers independently coded text fragments of the first seven interviews and grouped them into categories. This initial coding was discussed by the two researchers to redefine the categories and define the themes. Table 1 shows an example of the initial coding.



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Table 1. Example of coding; decision-making on the combined test

1th level: Fragment 2th level: Coding 3th level: Category 4th level: Theme

What do I have to do with the result? If it is good then that’s fine, but if it isn’t, then what can I do then? No, I thought, well, if I don’t have that test, I won’t have to think about it, but if I have the test, then I might get a bad result and I don’t know what I’d do. So, I decided not to have the test.

What to do with the result?

If I don’t have the test, then I won’t have to think about it

If I have the test and the results are bad, I don’t know what to do

Decision

What to do with test results?

I could be faced with a result that I don’t know what to do with

Termination: avoid facing the question about termination

Subsequently, the themes arising from the initial coding formed the basis for the next part of the analysis, during which one of the researchers re-analysed the complete set of interviews, trying both to complement and to redefine the specific themes and reach a clear definition of each theme based on all interview data. This led to an initial thematic map. Next, the two researchers analysed the themes and subthemes as well as potential relationships between themes and subthemes and generated a developed thematic map. These themes and subthemes were discussed with a third member of the research team. During the final phase of the analysis, the themes, subthemes, and possible (hierarchical) relationships were analysed, yielding the final thematic map. This final thematic map led to a detailed systematic description and explanation of the findings related to the research question.

Findings

A total of 19 women were invited to participate in the study, seven women did not want to participate, and the interviewer believed to have reached saturation after interviews were conducted with 12 women. The interviews lasted between 24 and 80 minutes, with an average of 44 minutes. The socio-demographic characteristics of the participants are described in Table 2. All women described themselves as Muslim. The interviewees’ gestational age ranged from 21 to 33 weeks. Two of the 12 women had the CT during the current pregnancy; both CT’s were negative. All 12 women had the FAS; none of these screening ultrasounds demonstrated structural anomalies.

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Table 2. Characteristics of the participants

Participant Immigrant Generation

Parity CT/FAS* Uptake Age Education In Employment

1 First 1 - / + 32 High Yes2 First 0 - / + 20 Medium No3 Second 2 - / + 33 Low Yes4 Second 0 - / + 30 High Yes5 Second 2 - / + 31 High No 6 Second 1 - / + 28 Medium No 7 Second 1 - / + 20 Medium No 8 First 1 - / + 26 Medium Yes9 First 2 + / + 33 High Yes 10 Second 1 - / + 27 Low Yes11 First 3 + / + 36 Medium Yes 12 First 2 - / + 34 Medium No

*CT = Combined test; FAS = Fetal Anomaly Scan

The most important themes that emerged during the analysis regarding decision-making on antenatal congenital anomaly tests are summarized below, illustrated by quotes that were translated by a professional translator into English. We have identified four themes: motherhood, perceptions of antenatal screening tests, termination and disability (figure 1).

Religious values

Motherhood

Disability Termination

COUNSELING

Counselor’s basic religious knowledge

Health Education

support

Decision-Making Support

agenda setting religion

Put off Combined Test

Perceptions of Prenatal Screening

Individual Values

Early pregnancy sickness

Drawn to Fetal Anomaly Scan

Finance structure

motherhood

Figure 1: Final thematic map of decision-making on participation in prenatal anomaly screening



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A. Motherhood: The lens through which decision-making process was madeMotherhood was perceived to begin with becoming pregnant, not with birth of the child. Thus, although two women were giving birth to their first child, they perceived themselves as mothers, and all women deliberated participation in the anomaly screening program through the lens of motherhood. Women’s views on motherhood, termination and disability were inseparably linked and were informed by individual religious beliefs. The value of motherhood as a blessing from God seemed to outweigh the possibility of having a disabled child:

“Sure, you’ve got to consider the parents as well as the [disabled] baby itself. I mean, going to the hospital all the time can’t be much fun. But then on the other hand, you’ve got to be pleased that you were blessed with the gift of motherhood at all.” (P10)

“I thought, ‘What if there is something wrong?’ It would have to be something really major before you’d want a termination, but I think it would be a desperately difficult choice. And, um, I would then go and pray about it and, um, ask God whether I should have it terminated or not. But it really seems like a very awkward choice, because you got pregnant in the first place because you wanted a baby, and then it doesn’t matter whether it’s disabled or not.” (P8)

The value of becoming a mother appears to outweigh any perceived challenges or disadvantages associated with having a disabled child.

B. Perceptions of antenatal screening tests Although CT and FAS are both non-invasive tests within the Dutch antenatal screening program, all women approached the CT as a ‘test’, while they approached the FAS as ‘only an ultrasound’. As one nulliparous woman said:

“Yes, well, the twelve-week ultrasound isn’t so much an ultrasound to see the baby as a test to detect an anomaly. And, um, that does have its risks. I reckon you’re going to want to see your baby so much by the time of the twenty-week ultrasound, even if there is a disability. But, um, in the ultrasound at twelve weeks, you simply don’t want to know. Period.” (P8)

This quote also underlines what all women mentioned as the most important reason to take the FAS: ‘to see your child’. Women perceived the FAS as part of routine antenatal care and did not view it as a screening test that they had a choice to opt for or not. The decision to have the FAS did not appear to be based on any deliberation other than the wish to connect with the baby:

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“For me, the 20-week ultrasound was particularly for watching my baby, looking at the gender and seeing the child, because it’s the final ultrasound and after that you won’t have any more ultrasounds and there’s no chance to watch your child again.” (P5)

In contrast to the lack of decision making involved around the FAS, the decision to have or decline the CT seemed to be based on extensive deliberations based on the perception of the CT as being a ‘test’. Women identified deterrents to CT at several levels: physically, financially (this test is not covered by the Dutch insurance system for women younger than 36 years of age) and values regarding termination and disability. Women reported not having the energy to even think of a CT due to early pregnancy nausea, tiredness or weakness. The cost of the CT seemed to influence the decision-making process for some. Although in general women who did not opt for the CT reported that their decision would not have been different had the CT been free, one woman who did not opt for a CT mentioned the cost as a reason, but also added what she saw as the implicit message of the required payment:

“Um, yes, I wouldn’t have minded the nuchal translucency ultrasound if it was free; I’d have gone then. The costs did affect my decision whether or not to do it, partly because of the indirect argument that it would surely be covered by the health insurance if it really mattered.” (P1)

C. Terminating PregnancyWith a prenatal fetal anomaly screening test, the ultimate question comes down to whether or not to terminate the pregnancy in the case of a confirmed disabled fetus and this question loomed large in women’s deliberations about whether to have or refuse the CT. The test was equated with termination for some. Not wanting to terminate pregnancy in any case, or not wanting to think about termination in the event of confirmed diagnostic testing, were the main reasons not to participate in CT:

“What was the combined test again? Oh, that’s the one about whether you want a termination or whatever. No, I didn’t do the test; I would not terminate the pregnancy.” (P2)

“I can have the test [CT] done - my religion lets me test whatever I want. But what should I then do with the result? It’s fine if the result is good, but what if it isn’t? What can I do then? I thought, well, if I don’t take the test then at least I won’t have to think about it [termination].” (P5)



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When asked about permissibility of termination according to the Islam, some of the women stated that a termination is always forbidden. Other women mentioned the following exceptions: when pregnancy endangers the mother’s health, when a woman was raped, when a young woman is unmarried, if there are financial problems, or when the fetus has serious congenital anomalies. Some women mentioned 40 days after conception as the last possible date that termination was allowed while others mentioned 120 days. Two women would consider terminating their own pregnancy in the event of a positive diagnostic test. Although the majority of the women would not consider a termination themselves, they underlined that the Islam is a flexible religion that offers the possibility of termination. Most women were of the same opinion with regard to not opting for a termination themselves, as illustrated by this quote:

“I’d never have a termination myself. That’s what I’d do; it’s just how I am. I’d never be able to live with myself after that - I’d really sort of feel that I’d killed something then. My feeling, something that’s just part of you, is - well - you never want to hurt anybody, and that’s the way I’d see it. And then I think, because I’m religious, that if I were then to get a child who was sick or whatever, then that’s the way it was meant to be, I reckon, and there’s a reason why. So that’s how things go, then, it’s part of life.” (P 3)

One of the pregnancies was unplanned; after using the pill in combination with antibiotics. The woman in question definitely did not want to have a disabled child and therefore she did the CT and would have terminated her pregnancy in the event of a confirmed anomaly even if it had been against Islamic rules. This woman was the only one who thought that Down’s syndrome was severe enough to terminate a pregnancy. The other woman who had the CT had many doubts about taking it; a friend’s comment had persuaded her to take the first step of the combined test:

“You’ve got nothing to lose” (P11)

Because of her age (over 36), she was the only participant who was offered the combined test free. Her motivation to take the CT was hoping for reassurance and she had not decided yet whether or not to do an invasive diagnostic test if the combined test showed a high risk of Down’s syndrome; nor had she decided whether or not to terminate her pregnancy in that case. Considering participation in the CT and termination in the event of positive diagnostic testing, some women said they would know immediately what to do, but most said they would discuss the subject with others, like their partner or female relatives. Although the women said they

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would consult their Islamic sources and discuss different aspects of the CT with others, they underlined that the decision would be their own, and that a partner’s opinion was secondary to their own. Some women did not inform even their partner about the possibility of having the CT:

“In terms of abortion, yes, well, I think he’d never approve of it, no way. I didn’t even ask him if he (laughs), if he wanted the test. I think that it’s mine, it’s in my belly (laughs). ... Yes, that’s what I say, and I always say it’s my responsibility too. If I have to justify that, then I’ll do it before God. I don’t have to justify my actions before a man.” (P3)

Nearly all women reported that their religious views were important and helpful in decision-making regarding the uptake of the CT. At the same time, women hastened to say that not only their religious views but also their own opinions were part of their deliberations. They also asserted that both perspectives inadvertently coincided. Apparently, they meant to claim an independent position regarding their religious views even when they valued their Islamic belief system in arriving at the right decision. Some women related terminating pregnancy to accountability during the Judgment on the Last Day; this also underlined the importance of making your own decision.

“Suppose I did decide to have the abortion. Could I forgive myself? Would God forgive me? Or, um, would I always have that hanging over me, whatever I do? How could I make it right? That would be very difficult, because you know that it isn’t allowed but you did it even so.” (P11)

D. Disability The deliberations on disability were partly informed by personal experiences, as many women were familiar with disabled relatives; one of them had previously given birth to a son with a serious heart disease. This made them aware of the possibility of having a disabled child. Nonetheless, they were not interested in the possibility of termination in the case of an anomaly:

“For me, again….a child has a right to live, no matter what condition .... you have to accept what God gives you.” P(5)

The interviewees said they believe God decides whether or not they have a disabled child. They did not experience this as punishment by God, but rather as a test or a sign. Views on disability were also strongly intertwined with religious views on the meaning of being disabled, for example, having a disabled child was reported to guarantee access to paradise.



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All women believed that in the eyes of God people with a disability are the same as ‘healthy’ people:

“Someone with a disability is worth just as much, I think... A disabled person doesn’t have as much to do as other people. And that’s the same as the difference you have between the rich and the poor, for instance. Some people - the rich - have more money than the poor, just like God made us all different... different people. So they’re just as human, but they don’t have as many things. For instance, there are some things you can’t do if you’re disabled, and there are some things you can’t do if you’re not rich. That’s how I see it.” (P6)

Discussion

The aim of this study was to understand how Muslim women of Moroccan origin approaching anomaly screening tests and to compare these findings to prior research on Muslim women of Turkish origin thus extending our knowledge on how pregnant Muslim women from different Islamic schools approach antenatal anomaly screening. We found that among Moroccan Muslim women the privilege of motherhood or becoming a mother appeared to outweigh any perceived burden of bearing a disabled child. Nearly all women thought of the CT as a test that could identify potentially anomalous infants, and could result in being offered termination of the pregnancy; a fact that resulted in their extensive deliberations and hesitation. In contrast, women viewed the FAS as an opportunity to see their child, and the decision to opt for the FAS was not focused on the possibility of pregnancy termination after an adverse outcome. Above all, women underlined that it was their own individual decision to take or refuse both tests as in the end they were accountable for their choices. As in our previous study among pregnant women of Turkish Islamic backgrounds, women’s views on termination were most decisive concerning taking the CT; these views were based on their individual religious beliefs and inseparably linked with their views on disability and on the value of life (Gitsels-van der Wal et al., 2014a).

Women’s considerations of pregnancy termination in response to fetal anomalies have, among other things, been based on their views on motherhood and reproduction. Motherhood was perceived to begin with pregnancy, even among nulliparous women, and not with birth of the child. In Islam, as well as in other religions, motherhood is regarded as a blessing and reproduction is taken to be a divinely ordained obligation (Stephens et al., 2010; Ivry et al., 2011).

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Religious beliefs were an important framework for deliberations, particularly regarding termination. Interestingly, there was diversity of opinions among the interviewees with regard to Islamic teaching on termination in the case of a confirmed anomaly, which reflects the diversity of opinions that exists among Muslim scholars on this topic (Rispler-Chaim, 1993; Atighetchi, 2007). In view of Islamic ruling, in our earlier work we saw that women of Turkish backgrounds were not aware of the fatwa, Islamic ruling, that permits termination in cases of serious anomalies up to 120 days after conception; this is in contrast to some of the Moroccan women in this study, who were aware of it (Gitsels-van der Wal et al., 2014a). An explanation could be, that the fatwa, introduced in 1990, only became relevant for the low risk pregnant population in the Netherlands since 2007 with the introduction of prenatal anomaly screening. Women with Turkish backgrounds were interviewed only one year after the antenatal anomaly screening program was introduced and therefore might not have known this specific fatwa (El-Hashemite, 1995).

Another possible explanation is that Muslims from Turkish and Moroccan origin belong to different Islamic schools (respectively Hanifî school and Mâlikî school) and opinions of timing of termination differs among them (Atighetchi, 2007). In this respect, the Hanifî school permits termination up to 120 days, and the Mâlikî school permits it up to 40 days although the majority of Mâlikî scholars prohibit termination even in the first 40 days (Rispler-Chaim, 1993; Atighetchi, 2007). However, in order to avoid stereotyping based on religion or ethnicity it is important for counsellors to recognize the diversity of opinions within Islamic jurisprudence as well as in the individual choices expressed by women in our study (El-Hazmi, 2007; Hasnain et al., 2011).

Despite Moroccan women’s knowledge of the possibility to terminate a pregnancy in the case of a positive diagnostic test result within Islamic ruling, only two women said they would consider a termination. One participant would consider a termination, even if it was against Islamic ruling. Recent studies among Muslim women also observed that, although women’s dominant view that termination is forbidden by Islam, Islamic rulings are not the only context for Muslim women’s attitude either for or against termination; women would consider also a termination for personal or medical reasons (Ahmed et al., 2006; Shaw, 2012). Finally, other studies have confirmed that women’s attitudes to termination were key in deciding whether or not to have the CT (Ahmed et al., 2006; Serror and Ville, 2009; Shaw, 2012; Gitsels-van der Wal, 2014a). Therefore, as Pilnick et al., we recommend counsellors to encourage all women to consider what they might do if the tests confirmed an anomaly (Pilnick et al., 2004).

In contrast to the CT, as in the study among women of Turkish backgrounds, the question whether or not to have the FAS was not related to the issue of termination (Gitsels-van der



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Wal et al., 2014a). This is not surprising in light of the fact that the FAS is performed in week 20 of gestation, which is after the 40 or 120 days in which termination could be permitted according to the Islam. In fact, the timing of the FAS in the Netherlands potentially promotes the perception of the FAS as only being a ultrasound to see the baby. Other studies among Muslim and non-Muslim women confirmed our finding that some pregnant women saw the FAS as ‘only an ultrasound to see the baby’, and relatively few women saw it as a screening tool for detecting structural anomalies (Williams et al., 2005; Molander et al., 2010; Skirton and Barr, 2010; Schoonen et al., 2011; Barr and Skirton, 2013; Gitsels-van der Wal et al., 2014a). The wish to see the baby seemed to be a significant determinant in the decision to have the FAS in part because the FAS is the only ultrasound offered in the second trimester in the Netherlands. The fact that women in our study did not understand that the FAS was optional raises questions about how information about this screening test is presented.

Although screening was often discussed with the spouse or (female) relatives, most women stated that it was their individual decision and some did not even inform their spouses about the CT. Pivetti et al. observed a similar decision-making process among Catholic women, namely that it is primarily an individual female choice (Pivetti et al, 2012). This emphasis on autonomy is not exceptional when women are held to be accountable to God for their decisions, as appeared to be true for most of the women in our study.

This study has some limitations. Women who were invited but did not want to participate in the study might have had different opinions and values than the women who took part. All the interviewed women opted for the FAS, so deliberations of Muslim women who decline the FAS could not be explored. Although we looked specifically for such women, we did not find any because the uptake in the study area is nearly 100%. Nevertheless, this study provides additional insights into important values within the decision-making process regarding antenatal anomaly screening by pregnant Muslim women; the results contribute to our understanding of decision-making within Muslim women of different Islamic streams. The inter-subjective approach to the analysis of the data contributes to the reliability of the results (Verhoeven, 2014). The inclusion of Muslim women of Moroccan descent from a variety of ages, parities, and levels of education, as well as those who are first and second generation in the Netherlands adds to the strengths of the study.

In conclusion: As in our previous study among Muslim women from Turkish descent, Moroccan women’s views on termination, disability and life, based on their religious beliefs, were key in decision-making on the CT. Additionally, the current study shows that motherhood was the lens through which Muslim women from Moroccan descent approached decision-making to participate in antenatal anomaly screening; furthermore, women from Moroccan descent

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underlined the importance to take their own individual decision because of their experienced accountability for their own choices. Although also observed in Turkish origin women, values on termination and disability dominated the deliberation whether to opt for the CT or not, while looking forward to see the baby led the decision to have a FAS were more strongly emphasised in the current study. The current study demonstrates that women viewed the CT as repellent while they viewed the FAS as attractive. In order to enable informed decision-making about antenatal anomaly screening in Muslim women, counsellors should be aware that women approach pregnancy, including the fetal anomaly screening tests through the lens of motherhood. Counsellors should have knowledge of Islamic beliefs on the value of life, disabled life, and the different beliefs of -the latest possible day for- termination. At the same time, counsellors should also be aware that Muslim women make their own conscious choices, sometimes even beyond their Islamic rulings. Research among Muslim women who decline the FAS is needed. Furthermore, recent research studied preferences of antenatal counselling among Dutch pregnant women. Additional research is needed into Muslim women’s preferences regarding counselling for antenatal anomaly screening.

Appendix

Antenatal screening for congenital anomalies has been offered to all pregnant women in the Netherlands since 2007, using an opt-in approach. The available screening comprises two non-invasive tests: the Combined Test (CT) and the Fetal Anomaly Scan (FAS). The CT is a risk assessment for Down’s syndrome, Edwards syndrome and Patau syndrome (respectively trisomy 21,18 and 13), comprising a blood test for PAPP-A and free β HCG, and an ultrasound to measure the nuchal translucency at around twelve weeks’ gestation. The FAS is an ultrasound to detect structural anomalies, carried out around twenty weeks of gestation. The CT is offered free for women aged are 36 or older, whereas younger women pay approximately 150 Euros. The FAS is offered without cost to all women. In the event of a confirmed diagnosis of abnormality, two options are available: terminating the pregnancy before 24 weeks’ gestation, or health-oriented antenatal and postnatal care for the fetus combined with support for the parents. Both CT and FAS potentially require three decisions: 1) to have antenatal screening, 2) to follow up positive screens with diagnostic tests which carry an associated 0.5% risk of miscarriage, and 3) when a positive finding is confirmed, to terminate the pregnancy or prepare for having a child with an anomaly. In the Netherlands, the mean uptake is around 27% for the CT and 91% for the FAS (Fracheboud et al., 2011). Generally, factors such as age, parity, anxiety, family situation and personal experiences play a role in decision-making on the CT and FAS (Van den Berg et al., 2005; Seror and Ville, 2009; Fransen et al., 2010a; Maxwell et al., 2011; Tischler et al., 2011; Bakker et al., 2012; Crombag et al., 2013; Gitsels-van der Wal et al., 2014b). Since April 2014, in the Netherlands, only



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women who are at risk (e.g. the CT results show an increased chance of carrying a child with Down’s syndrome) are offered the non-invasive prenatal test (NIPT) in a study setting; the NIPT is a blood test to determine fetus’ DNA from mother’s blood (www.niptconsortium.nl).

Conflict of interest statementThe authors declare that they have no competing interests.

Ethical approvalThe design and conduct of the study were approved by the Medical Ethics Committee of the VU University Medical Centre Amsterdam.

AbbreviationsCombined Test – CTFetal Anomaly Scan - FAS

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Fransen, M.P., Essink-Bot, M.L., Vogel, I., Mackenbach, J.P., Steegers, E.A., Wildschut, H.I., 2010b. Ethnic differences in informed decision-making about prenatal screening for Down’s syndrome. Journal Epidemiology Community Health 64(3), 262-268.

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Rispler-Chaim, V., 1993. Islamic medical ethics in the twentieth century. Brill, Leiden.Schoonen, H.M., Essink-Bot, M.L., Van Agt, H.M., Wildschut, H.I., Steegers, E.A., de Koning, H.J., 2011.

Informed decision-making about the fetal anomaly scan: what knowledge is relevant? Ultrasound in Obstetrics and Gynecology 37(6), 649-657.

Roadmap of prenatal screening [Draaiboek prenatale screening], 2011. RIVM, Bilthoven. (in Dutch)Seror, V., Ville, Y., 2009. Prenatal screening for Down syndrome: women’s involvement in decision-

making and their attitudes to screening. Prenatal Diagnosis 29(2), 120-128.Shaw, A., 2012. The say Islam has a solution for everything, so why are there no guideliness for this?

Ethical dilemmas associated with the births and deaths of infants with fatal abnormalities from a small sample of Pakistani Muslim couples in Britain. Bioethics 26(9), 485-492.

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Tischler, R., Hudgins, L., Blumenfeld, Y.J., Greely, H.T., Ormond, K.E., 2011. Noninvasive prenatal diagnosis: Pregnant women’s interest and expected uptake. Prenatal Diagnosis 31(13), 1292–1299.

Van den Berg, M., Timmermans, D.R.M., Kleinveld, J.H., Garcia, E., Van Vugt, J.M.G., Van der Wal, G., 2005. Accepting of declining the offer of prenatal screening for congenital defects: test uptake and women’s reasons. Prenatal Diagnosis 25, 84-90.

Verhoeven, N., 2014. Doing research. Boom Lemma: Den Haag, 331-337. (in Dutch)Williams, C., Sandall, J., Lewando-Hundt, G., Heyman, B., Spencer, K., Grellier, R., 2005. Women as moral

pioneers. Experiences of first trimester antenatal screening. Social Science & Medicine 61, 1983-1992.

Chapter 5Antenatal counselling for congenital anomaly tests:

pregnant Muslim Moroccan women’s preferences

Gitsels-van der Wal JT, Martin L, Manniën J, Verhoeven P, Hutton EK, Reinders HS.

Midwifery 2015;31:50-57.

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Highlights

Pregnant Muslim Moroccan women prefer: - to be counselled as individuals and religion is part of their individuality.- counsellors to initiate questions about women’s values and religious beliefs regarding decision-making on anomaly screening.- to be adequately and accurately informed about screening options.


Antenatal counselling for congenital anomaly tests: pregnant Muslim Moroccan women’s preferences

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Abstract

Objective: To gain insight into pregnant Muslim Moroccan women’s preferences regarding the content of and approach to antenatal counselling for anomaly screening.

Design: Qualitative study using in-depth interviews.

Setting: Participants were recruited from one midwifery practice in a medium-sized city near Amsterdam.

Participants: Twelve pregnant Muslim Moroccan women who live in an area with a high density of immigrants.

Data collection and data analyses: We conducted open interviews after the cut-off date for the 20 week fetal anomaly scan and used techniques from the thematic analysis approach described by Braun and Clarke (2006).

Findings: Pregnant Muslim Moroccan women’s preferences towards counselling could be summarised in three main findings. Firstly, pregnant Muslim Moroccan women underlined the importance of accurate and detailed information about the tests procedures and the anomalies that could be detected. Secondly, pregnant Muslim Moroccan women preferred counsellors to initiate discussions about moral topics and its relationship with the women’s religious beliefs and values to facilitate an informed choice about whether or not to participate in the screening tests. Thirdly, pregnant Muslim Moroccan women preferred a counsellor who respects and treats them as an individual who has an Islamic background. The counsellor should have practical knowledge of Islamic rulings that are relevant to the anomaly tests.

Key conclusions: Pregnant Muslim Moroccan women preferred to be accurately informed about antenatal anomaly tests and to be asked about their individual views on life by a counsellor who has genuine interest in the individual client and applied knowledge of Islamic beliefs regarding the value of life.

Implications for practice: Counsellors should explore clients’ moral values about quality of life and termination and its relationship with religious beliefs. Counsellors should know about Islamic rulings related to antenatal anomaly screening.

Keywords: genetic counselling, antenatal diagnosis, Islam, needs assessment, Down Syndrome, personal autonomy.

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Introduction

Since 2007, the Dutch antenatal anomaly screening programme has consisted of two tests: the combined test (CT) at 12 weeks’ gestation, which is a probability test for trisomy 13, 18 and 21 (Patau, Edwards and Down Syndromes respectively), and the fetal anomaly scan (FAS) at 20 weeks’ gestation to detect structural anomalies. In the case of a serious anomaly a woman may choose to terminate the pregnancy before 24 weeks of gestation or have antenatal care focussed on the best outcome possible. Recently, a nationwide study showed overall mean CT and FAS uptakes of respectively 23% and 90% (Gitsels-van der Wal et al., 2014c), but findings among Muslim women indicate somewhat lower rates of uptake for CT and FAS (mean rates 20% and 80% respectively). At the time the current study was conducted, considering early antenatal genetic screening precipitated three potential decisions: (1) opt for the CT or not, (2) follow-up any positive CT result with amniocentesis which is associated with a 0.5% risk of miscarriage and (3) in cases of a trisomy, either to prepare for having a child with a trisomy or to terminate the pregnancy before 24 weeks’ gestation. Since April 2014, the non-invasive antenatal test (NIPT) has been added to the national screening programme as part of a nationwide study (http://www.niptconsortium.nl). Considering second trimester anomaly screening follows a similar process of four potential decisions (Fig. 1).The goal of counselling about anomaly screening is to enable a pregnant woman or couple to make informed choices with regard to screening tests (RIVM, 2011). An informed choice must meet three criteria, being ‘based on relevant knowledge, consistent with the decision-maker’s values and beliefs, and behaviourally implemented’ (O’Connor and O’Brien Pallas, 1989, Skirton and Barr, 2010, Vanstone et al., 2012, Dixon and Burton, 2014). To facilitate informed choices, counselling consists of health education (e.g. giving information about antenatal congenital anomaly tests and about the conditions that could be detected), decision-making support (including exploring the client’s personal standards and values) and building a good client–counsellor relationship (e.g. showing genuine interest in each individual client) (Elwyn, 2004,Resta, 2006, Smets et al., 2007, Martin et al., 2013). Decision-making support has been seen as an important function in the theoretical antenatal counselling model (Meiser et al., 2008, Martin et al., 2014a). Previously, Martin et al. (2013) studied what midwifery clients in the Netherlands preferred in terms of counselling for antenatal anomaly screening; almost all participants valued the client–counsellor relationship and health education as important aspects of counselling whereas one-third of the participants valued individual decision-making support as important. As that study did not provide sufficient information about the preferences of pregnant women with non-Dutch, non-Western origins, further research was recommended to assess the counselling preferences for anomaly screening among women of non-Western origin.



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Figure 1. Flow chart of choices within the Dutch Antenatal Anomaly Screening Programme based on an opt-in procedure

Right not to know about the antenatal screening programme

Combined Test (12 weeks’ gestation)

Foetal Anomaly Scan (20 weeks’

gestation)

Amniocentesis if CT ≥1:200 / if NIPT

indicates a trisomy

NIPT if CT 1>200

Diagnosed anomaly

Amniocentesis in cases of structural

defects

Diagnosed anomaly

Termination of pregnancy before 24

weeks’ gestation

Counselling about anomaly screening tests

Confirmatory ultrasound a if defect is seen

Right not to know in the event of a foetal anomaly

NIPT* if CT ≥1:200

Reproductive choice: Continuation / termination of pregnancy before 24 weeks gestation

Termination of pregnancy

*added in study setting in April 2014

Figure 1. Flow chart of choices within the Dutch Antenatal Anomaly Screening Programme based on an opt-in procedure

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An important and growing group of women with non-Western origins in the Netherlands is non-Dutch Muslim women. Recent studies have shown that Muslim women are less likely to choose to have fetal anomaly screening tests and that their views on life, disabled life and termination based on their religious beliefs are a key factor in their decision-making on whether or not to have anomaly screening done (Neter et al., 2005, Fransen et al., 2010, de Vlemminck et al., 2012,Gitsels-van der Wal et al., 2014a, Gitsels-van der Wal et al., 2014c, Gitsels-van der Wal et al., 2015). Islamic rulings permit termination in cases of serious anomalies, but only before the ensoulment, the moment when an angel of God breathes the spirit in (Rispler-Chaim, 1993, Albar, 1996). There are different views on the moment of ensoulment, but the majority of Islamic scholars believe that ensoulment takes place at the 120th day after conception or 19 weeks plus one day of clinical gestation (Albar, 1996, Kithamy, 2013). Allowing termination in case of a serious anomaly before the ensoulment reflects Islamic views on the principle of respecting women’s autonomy in their reproductive choices (Kithamy, 2013).

The first aim of the current study is to explore the preferences among pregnant Muslim Moroccan women, who are of non-Western origin, regarding content of and approach to antenatal counselling for anomaly screening and the second is to determine their preferences as regards the counsellor’s knowledge of Islamic beliefs.

Method and recruitment

Data collectionWe conducted open interviews in Dutch with pregnant Muslim women of Moroccan descent, who belong to the group of non-Western non-Dutch women, between December 2011 and May 2012. People from Morocco are a large minority group in the Netherlands (Statline, 2014). The study was designed to explore a) pregnant Muslim Moroccan women’s attitudes towards participation in anomaly screening (Gitsels-van der Wal et al, 2014d), and b) pregnant Muslim Moroccan women’s preferences regarding the approach taken to counselling for anomaly screening as well as pregnant Muslim Moroccan women’s opinions about the counsellor’s knowledge of Islamic beliefs, which is reported here. The qualitative set-up of the study was built on a large quantitative study focusing on clients’ preferences on appropriate counselling in general (Martin et al., 2013). The Medical Ethics Committee of the VU University Medical Centre in Amsterdam approved the study. Informed consent was obtained in writing from all participants.



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Participants In the Netherlands, around 80% of pregnant women start antenatal care in primary midwifery practices. Midwives counsel these pregnant women about antenatal anomaly screening (Wiegers, 2009). We recruited participants from a population of pregnant women at a primary care midwifery practice situated in a medium-sized city; this was done by purposive sampling. The practice in question has a relatively large proportion of clients from ethnic minorities. We only included pregnant Muslim Moroccan women who were born in Morocco or whose parents were born there, who had a reasonable command of Dutch, and who were past the cut-off date for antenatal anomaly testing. In a homogeneous population, ten to twelve interviews will typically reach data saturation, so we planned twelve interviews (Guest et al., 2006).

Procedure First, midwives gave information about the study to women who were eligible to participate. Next, one of the researchers asked the pregnant Muslim Moroccan women whether they would agree to be interviewed on the topic. If consent was given, an interview-appointment was made. Pregnant Muslim Moroccan women who did not agree were asked about their reasons for not participating. The interviewer was a midwife from the practice where the recruitment was done. However, she was not the care-provider of any participants. The interviews were recorded digitally and transcribed verbatim with permission of the participants.

InstrumentsTo examine pregnant Muslim Moroccan women’s preferences regarding antenatal counselling for anomaly screening, we asked the participants two questions:

1. What topics should be addressed during counselling on anomaly screening?2. What do you think that a counsellor should know about the faith of Muslim pregnant

women when counselling them about antenatal anomaly screening?

Analysis planWe coded and analysed the transcripts using techniques from the Thematic Analysis, an inductive approach described by Braun and Clarke (2006). To obtain inter-subjectivity of the results, two researchers individually coded text fragments of the first seven interviews and grouped them into categories. The two researchers discussed the initial coding and then redefined the categories and defined the themes. Table 1 gives an example of the initial coding. One of the researchers then examined the remaining interviews, trying both to complement and to redefine the themes raised by the initial coding. Finally, the two researchers analysed the themes and subthemes, plus possible connections between themes and subthemes.

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Table 1. Example of coding; preferences regarding the counsellor’s agenda setting

1st level: Fragment

2nd level: Coding

3rd level: Category 4th level: Theme

(Interviewer): Do you think that a counsellor ought to know something about how Islam thinks about being handicapped or about terminating the pregnancy? (Participant): Maybe, in the sense that Muslim women may say that I won’t have a termination, and then you’ll know why. That’s really the only thing. The rest doesn’t matter. But I do reckon that you don’t all say “Uh-oh, here comes a Muslim so we won’t ask her.” So do keep it all the same. You have to ask, because you never know! Muslim women can also… within a religion, there’s also (how should I put it?), uh, one woman may believe very strongly and stick to all the rules, but for others it doesn’t involve much more than praying and they might choose a termination, you know? And they haven’t been given the chance to make that choice.

Understand why Muslim women might not have a test done

No other knowledge of Islam required

Do ask whether Muslim women would want to have the test done

Keep it the same as for non-Muslims

Do ask about this, as Muslim women may have differing perceptions or interpretations of their religion, and there could be some who would choose to terminate the pregnancy but who are then not given the opportunity

Knowledge of Islam focused on the views on life and termination

Muslim women should be informed

Do not put Muslim women into a separate conceptual group

Treat Muslim women as individuals, so that each woman can make an informed choice

Counsellor: applied knowledge

Counsellor: unbiased attitude, individual approach, and ‘obligation’ to inform each Muslim woman

Findings

A total of 19 pregnant Muslim Moroccan women were invited to participate in the study. For the clarity of the paper, ‘interviewed women’ or ‘interviewees’ will be used to refer to the interviewed pregnant Muslim Moroccan women, i.e. the study sample. Seven invited women did not want to participate, mainly because they were busy or lacked confidence that their views would be in line with Islamic rulings on antenatal anomaly screening. The ages of the twelve interviewed women ranged from 20 to 36 years (see Table 2). Six interviewed women were first generation immigrants and six interviewed women were second generation non-Dutch; the latter means that they are born in the Netherlands and that (one of) their parents were born in Morocco. All participants described themselves as Muslim. All interviewed



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women started antenatal care before twelve weeks’ gestation and were therefore in time for counselling for both tests. Two interviewed women took the CT and all twelve interviewed women opted for a FAS.

Table 2. Characteristics of the participants

Participant Immigrant Generation

Age CT/FAS* Uptake Parity Education

1 First 32 - / + 1 High2 First 20 - / + 0 Medium3 Second 33 - / + 2 Low4 Second 30 - / + 0 High5 Second 31 - / + 2 High6 Second 28 - / + 1 Medium7 Second 20 - / + 1 Medium8 First 26 - / + 1 Medium9 First 33 + / + 2 High10 Second 27 - / + 1 Low11 First 36 + / + 3 Medium12 First 34 - / + 2 Medium

*CT = Combined test; FAS = Fetal Anomaly Scan

Analysis of the interviewed women’s preferences for antenatal counselling about anomaly screening yielded in three themes: 1) provision of accurate and detailed information, 2) exploring the client’s values, and 3) the counsellor’s knowledge and attitude. Analysis also produced an overarching finding. Interviewed women indicated that they needed sufficient time during the counselling consultation and would like an opportunity for a follow-up discussion at a later date; sufficient time was also needed to read the leaflet about the screening.

Theme 1. Accurate and detailed informationInterviewed women wanted accurate and detailed medical information about the anomalies that could be detected. Interviewed women indicated that one factor that considering a termination would depend on was the seriousness of an anomaly.

“If it’s a really bad abnormality and the baby’s life would be, well, ruined… then I think that I would, eh, terminate it.” (P6)

Interviewed women also preferred detailed information about the process and the pros and cons of the tests that are available. Several interviewed women reported not wanting a test with a risk of a spontaneous miscarriage, as explicitly stated by one interviewee:

“Muslim women do not want a test with a risk of a spontaneous miscarriage”. (P11)

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Many interviewed women in this study also wanted to receive written information; on the other hand, some women experienced difficulties in understanding the written information and preferred a clear verbal explanation. Furthermore, because of the density of the information, some interviewed women suggested discussing the antenatal screening tests during two consultations instead of one; others suggested reading the brochure at home before counselling so that they could ask specific questions during the counselling session.

Some of the interviewed women were familiar with the information about anomaly testing, because they had been counselled on anomaly screening tests during a previous pregnancy. These women suggested that counselling a multiparous pregnant woman should start by asking her what she already knows about the tests.

Theme 2. Exploring client’s values Interviewed women in this study indicated a number of topics that a counsellor should address in order to help them make their own decisions. Firstly, they suggested for instance that counsellors should ask clients what kinds of anomalies would be acceptable and would result in them keeping the baby. For most interviewed women in this study, Down Syndrome was not severe enough to terminate the pregnancy. In addition to the seriousness of an anomaly, some interviewed women explained that the decision whether or not to terminate a pregnancy if an anomaly was diagnosed could depend on the physical and mental strength of a mother or the strength of her faith:

“For me, personally, well... yes, because like I just said [my body has a lot of weaknesses] I know that I myself simply couldn’t handle it. I couldn’t do that and I wouldn’t want to do that to the child. ...so yes, for me that would be a reason to have a termination.” (P7)

“One woman may believe very strongly and stick to absolutely all the rules, but there are others who don’t go much further than saying a few prayers, and maybe they would choose to terminate a pregnancy, you know?” (P6)

Secondly, the counsellor tends to set the agenda during the consultation, in terms of questioning moral issues such as what women think constitutes a healthy child: interviewed women seem to prefer using that agenda as a stepping-stone towards doing research at home using their own religious sources, after the consultation. In the case of moral issues, interviewed women were familiar with doing research using their own (religious) resources and indicated that decision-making about antenatal anomaly screening is not so easy and could take quite some time:



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“Yes, it’s so complicated – the various rules and the nuances within them and so forth. If there’s some kind of delicate question that you can’t simply give a yes-and-no answer to, that you have to ask or read about carefully and see exactly what’s been said about it… and then there can be contradictions too. So yes, it’s quite an issue. You do have to be able to make a carefully considered choice.” (P4)

Therefore, as religious beliefs play a role in interviewed women’s decision-making about whether or not to participate in anomaly screening, one interviewee suggested that it would be helpful for Muslims if counsellors were to ask the following questions:

“Are you religious? What does it mean to you? And what could it mean in this case?” (P1)

Thirdly, interviewed women in this study emphasised that they did not want the counsellor’s advice about whether or not to take the anomaly tests. However, interviewed women found it difficult to speak and think about the tests, so most of them preferred to get advice about how to discuss the tests with their spouse at home, and about how to think and decide about having the tests. In summary, interviewed women wanted to be questioned about the moral issues of anomaly screening and to be challenged to make an autonomous and carefully considered decision. As an interviewee expressed it:

“Make sure that I think about it very carefully!” (P1)

Theme 3. The counsellor’s knowledge and attitudeInterviewed women in this study preferred a counsellor who has practical knowledge of Islamic views on life and who respects every single woman and her decision. The counsellor’s knowledge of Islamic views and a respectful attitude seem to be a necessary condition for meeting these two criteria. Applied knowledge of the Islam and a respectful attitude should on the one hand guarantee that the counsellor informs a Muslim client appropriately about e.g. the details of the antenatal tests and the medical conditions that could be detected; on the other hand, this knowledge should help them support active decision-making.

Applied knowledge of Islamic beliefsWhen discussing counselling about anomaly screening, there were some interviewed women who did not think that counsellors should necessarily know about Islam. However, the majority of the interviewees preferred counsellors who have some knowledge of Islam or Islamic rulings (relevant to antenatal anomaly tests in particular), e.g. knowledge about

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different Islamic views on life, disabled life, termination and ensoulment, and the variability within Islam. Knowledge of Islamic rulings would be a helpful tool for the counsellor when asking exploratory questions intended to help women make their own decisions; it ought also to make the conversation during counselling easier, because the counsellor could then communicate more consistently with Muslims women’s frame of reference. As an interviewee said:

“It would be useful [for the counsellor] to know about, uh, what the religion [Islam] is all about… it makes it easier to talk...” (P10)

On the other hand, interviewed women emphasised the importance of making their own decisions and the counsellor’s knowledge about Islamic rulings should therefore not be used with the aim of telling pregnant Muslim women what to decide or what is allowed within Islam. As an interviewee put it:

“If you live in Saudi Arabia, where Islam is – well very, uh, strictly according to their interpretation – then I think, yes, you can say that this is allowed and that isn’t and so forth. But I don’t think that’s necessary here in the Netherlands. I mean, it’s my decision whether I want an abortion or to have a test done – not the midwife’s or anybody else’s. I don’t think that’s necessary. Nope. I think ‘No, this is really up to me’ – because I’m the Muslim, aren’t I?!” (P4)

The preceding quote also shows how important it is to ask about a woman’s religious beliefs regarding decision-making on anomaly screening.

Respectful attitudeAlthough we did not ask the interviewed women about their preferences regarding the professional’s attitude during counselling, they did bring up a number of attitudinal aspects. Interviewed women preferred to be approached respectfully, not as a generic Muslim woman but as an individual who has an Islamic background. Furthermore, based on relatives’ experiences, an interviewee underlined the counsellor’s duty to put antenatal anomaly screening on the agenda during consultations with Muslim women:

“But I do reckon that you all don’t think ‘Uh-oh, here come a Muslim woman so we’d better not ask.’ So do keep doing the same things. You do have to ask, because you never know!” (P6)



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Interviewed women in this study also felt that the content of the counselling conversation was rather heavy and scary; interviewees therefore also wanted the counsellor to speak calmly and clearly, taking plenty of time and using understandable words to reduce the anxiety. The aspects of counsellor’s attitude listed above plus practical knowledge of Islamic rulings seemed to be the basis for antenatal counselling about anomaly screening that would be better tailored to suit Muslim women’s preferences.

Discussion

This study aimed to obtain insights into the preferences of pregnant Muslim women of Moroccan descent regarding content of and approach to antenatal counselling for anomaly tests and to determine women’s preferences towards counsellor’s knowledge of Islamic beliefs. Consistent with the criteria of informed choice, our findings show that interviewed women prefer a counsellor who accurately informs them about the tests and the anomalies that could be detected, and who put moral topics on the counselling agenda in order to facilitate a deliberate, consciously made informed choice about whether or not to participate in the screening programme (O’Connor and O’Brien Pallas, 1989,Skirton and Barr, 2010, Vanstone et al., 2012, Dixon and Burton, 2014). Furthermore, interviewed women preferred a counsellor who not only respects client’s cultural and religious background but also knows about Islamic rulings that are relevant to antenatal anomaly screening.

The preferences of the study participants are in clear alignment with the three functions of the theoretical antenatal counselling model: (1) the need for accurate and detailed information as part of the health education function; (2) informed choice based on the client’ values and counselling that is tailored to the individual as part of decision-making support; and (3) the need for a reliable counsellor as part of the client–counsellor relationship (Martin et al., 2013). However, the aforementioned study also demonstrated that only one-third of the clients consider counsellor’s decision-making support as important (Martin et al., 2013). Another study among midwife counsellors showed that only half of these counsellors value decision-making support as important (Martin et al., 2014a). To meet the needs of Muslim Moroccan pregnant women, further research is needed as to why some midwife counsellors do not value decision-making support as an important component of antenatal counselling.

Furthermore, our findings indicate that pregnant Muslim Moroccan women prefer counsellors to initiate discussions about issues that help decision-making, such as perceptions of the seriousness of anomalies that the tests may uncover and how that relates to women’s values and religious beliefs. These preferences suggest that counsellors should use an active counselling approach (e.g. asking exploring questions about moral topics) particularly because

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of the strong relationship between individuals’ values regarding disability and termination and the decision whether to opt for antenatal screening or not, and making an autonomous informed choice. Such an active counselling approach was also recommended by other studies (Van Zwieten, 2008, Pennacchini and Pensieri, 2011, Vanstone et al., 2012). Vanstone et al. (2012)) suggest a model for counselling in which (1) the counsellor supports the woman to fully understand the information about the tests and the anomalies that could be detected and its consequences, such as the possibility to terminate a pregnancy in the event of a diagnosed serious anomaly; (2) the counsellor and the women discuss woman’s individual values related to the tests and the possible tests outcomes; and (3) the woman makes her autonomous informed decision on her own. The model as suggested by Vanstone et al. also corresponds to our study participants’ preferences towards counselling for antenatal anomaly screening: receiving accurate and detailed information about anomaly screening, discussion of moral topics in relationship with client’s view on life and religious beliefs. This model is also consistent with our earlier findings that pregnant Muslim Moroccan women underline the importance of making their own autonomous decision (Gitsels-van der Wal et al., 2015).

A recent study revealed that relatively many clients preferred the counsellor to give advice using a directive approach of counselling, about whether or not to take the antenatal tests as part of decision-making support (Martin et al., 2013). In contrast, the interviewed women in our study strongly preferred not to be advised whether or not to take the tests; they preferred a counsellor to empower them make their own, carefully deliberated decision whether or not to take the tests. This is perhaps not so surprising in an Islamic context, as individuals are held accountable for their own decisions and they are therefore familiar with doing research into reliable authoritative sources such as the Qur’an and the Hadith with the aim of making the right decisions (Bazna and Hatab, 2005, Mustafa, 2014). Although pregnant Muslim Moroccan women did sometimes stress the importance of making their own, individual decisions (Gitsels-van der Wal et al., 2015), Muslims will in general discuss anomaly screening with family members prior to taking the autonomous decision, and if necessary with religious scholars (El-Hazmi, 2007).

Previous studies showed that pregnant women prefer counsellors to have a basic knowledge of women’s religious and cultural beliefs so that they can help women explore their own values about the issues for which decisions have to be made (Stephens et al., 2010, Skirton and Barr, 2010, Hasnain et al., 2011, Gitsels-van der Wal et al., 2014a). Our findings help to define counsellor’s knowledge of Islam that Muslim women feel is necessary for adequate counselling, namely practical knowledge of Islamic rulings that are relevant to various aspects of antenatal anomaly screening, such as views on disabled life and on termination. However, a recent Dutch study revealed that knowledge of Islamic rulings relevant to anomaly



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screening among midwifery counsellors was poor and that the counsellors needed additional knowledge about religious beliefs relevant to counselling for antenatal anomaly screening (Gitsels-van der Wal et al., 2014b). In order to take client’s cultural and religious background into account, it is also important to recognise the diversity in individuals’ experience of faith and individual choices (Tsianakas and Liamputtong, 2002, El-Hazmi, 2007, Hasnain et al., 2011). In this context, as one of the pregnant Muslim Moroccan women suggested, questions such as ‘Are you a believer?’ followed by ‘What would religion mean to you in relation to antenatal screening tests?’ can help to facilitate informed choice in line with the decision-maker’s values; because every single person has a philosophy of life, religious or non-religious, these questions might be raised regardless of the client’s religious background. Interviewed women in our study preferred counsellors to initiate discussion of the role of the religious background during antenatal counselling for anomaly screening. In contrast, our earlier work exploring midwives’ experience with counselling revealed that some counsellors believe that the responsibility to raise issues of religious background rests with the client and that religious beliefs are irrelevant (Gitsels-van der Wal et al., 2014b). These findings are perhaps not surprising in the Dutch context, since for decades Dutch society has shifted towards a secular perspective in which religion should be placed in private domain and not in public domain (Van der Donk et al., 2006). As professional health care, e.g. midwifery care and counselling for anomaly screening, is seen as part of the public domain, the moral aspects of counselling are commonly addressed from a secular rather than a religious perspective. This practice fails to respond to the preferences of our participants, who prefer to be counselled as individuals and whose religion is part of their individuality. As we recognise that religious background of clients plays an important role in decisions about antenatal anomaly screening the importance for counsellors to invite women to discuss the role of faith must be emphasised (Anderson, 2009). Discussing the role of faith and exploring values focused on decision-making about anomaly screening requires additional emphasis in counselling training programs.

The pregnant Muslim Moroccan women in our study emphasised the importance of receiving accurate and factual information about anomaly screening test characteristics including detailed information about which anomalies can be detected. One of the reasons for the latter could be that some Muslim Moroccan women would consider termination if an anomaly is diagnosed (El-Beshlawy et al., 2012, Shaw, 2012, Belahcen et al., 2014, Gitsels-van der Wal et al., 2015). Informing pregnant Muslim women of Moroccan descent is all the more important because there is as yet no antenatal screening for Down Syndrome in Morocco and termination of an affected fetus with for example Down Syndrome is forbidden (Belahcen et al., 2014). Muslim women of Moroccan descent might therefore not know anything at all about antenatal screening for Down Syndrome and the possibility of a decision about whether

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or not to terminate the pregnancy. Some other Muslim countries such as Iran and Saudi Arabia do have antenatal anomaly screening programmes and have lists of specific serious anomalies for which termination of pregnancy is allowed before the ensoulment (Hedayat et al., 2006, Al-Alaiyan and Alfaleh, 2012).

To the best of our knowledge, little qualitative research has been done into pregnant women’s preferences regarding appropriate counselling for anomaly screening. The current study provides insights into pregnant Muslim Moroccan women’s preferences and the results therefore (1) contribute to the conceptualisation of women’s preferences about anomaly screening counselling; and (2) strengthen the theoretical three function antenatal counselling model. These interviews were with women in daily life situations and therefore generated findings that give a good picture of reality, which helps ensure that the content can be generalised (Verhoeven, 2014). Another strength is the thematic approach to the analysis, which improves the validity of the outcomes. The systematic and inter-subjective set-up of the analysis adds to the reliability of the study (Verhoeven, 2014). Furthermore, our study included pregnant Muslim Moroccan women of both the first and second generations, representing a variety of parities, ages and levels of education. However, pregnant Muslim Moroccan women in our study all had low-risk pregnancies, spoke Dutch and were recruited in a single midwifery practice in the Netherlands. We would therefore recommend future research to verify and quantify our findings. We also recommend future research into the midwife counsellors’ arguments not to consider decision-making support as an important part of the theoretical three function antenatal counselling model.

Key conclusion:In line with the theoretical three function counselling model, pregnant Muslim Moroccan women preferred to be given accurate and detailed information about antenatal anomaly tests and to be asked about their individual views on life by a counsellor who has a genuine interest in the individual client and practical knowledge of Islamic beliefs about the value of life, disabled life and termination. In addition to the theoretical model, counselling on anomaly screening should include an explicit exploration of the role of religion in decision making for each woman.As a result of our findings we produced a set of recommendations for the counselling practice. We recommend that counsellors:

- Counsel according the theoretical three functions counselling model: 1) health education; 2) decision-making support; and 3) client-counsellor relationship

- Personalise the counselling and tailor it to the needs and knowledge of the client- Take sufficient time to share information about the tests’ possibilities and procedures,

and give information about the anomalies that could be detected



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- Put moral topics on the agenda and its relationship with clients’ religious beliefs - Know about Islamic rulings that are relevant to antenatal anomaly screening

Conflict of interest statementThe authors declare that they have no competing interests.

Ethical approvalThe design and conduct of the study were approved by the Medical Ethics Committee of the VU University Medical Centre Amsterdam.

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Gitsels-van der Wal, J.T., Verhoeven, P.S., Manniën, J., Martin, L., Reinders, H.S., Spelten, E., Hutton, E.K., 2014c. Factors affecting the uptake of prenatal screening tests for congenital anomalies; a multicentre prospective cohort study. BMC Pregnancy and Childbirth 14, 264.

Gitsels-van der Wal, J.T., Martin, L., Manniën, J., Verhoeven, P., Hutton, E.K., Reinders, H.S., 2015. A qualitative study on how Muslim women of Moroccan descent approach antenatal anomaly screening. Midwifery, 31, 43-49.

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Martin, L., Hutton, E.K., Spelten, E.R., Gitsels-van der Wal, J.T., van Dulmen, S., 2014a. Midwives’ views on appropriate antenatal counselling for congenital anomaly tests: Do they match clients’ preferences? Midwifery 30(6), 600-609.

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Chapter 6Prenatal Screening for Congenital Anomalies: Exploring Midwives’

Perceptions of Counseling Clients with Religious Backgrounds

Gitsels-van der Wal JT, Manniën J, Gitsels LA, Reinders H., Verhoeven PS, Ghaly MM, Klomp T, Hutton EK.

BMC Pregnancy and Childbirth 14, 237.

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Abstract

Background: In the Netherlands, prenatal screening follows an opting in system and comprises two non-invasive tests: the combined test to screen for trisomy 21 at 12 weeks of gestation and the fetal anomaly scan to detect structural anomalies at 20 weeks. Midwives counsel about prenatal screening tests for congenital anomalies and they are increasingly having to counsel women from religious backgrounds beyond their experience. This study assessed midwives’ perceptions and practices regarding taking client’s religious backgrounds into account during counseling. As Islam is the commonest non-western religion, we were particularly interested in midwives’ knowledge of whether pregnancy termination is allowed in Islam.

Methods: This exploratory study is part of the DELIVER study, which evaluated primary care midwifery in the Netherlands between September 2009 and January 2011. A questionnaire was sent to all 108 midwives of the twenty practices participating in the study.

Results: Of 98 respondents (response rate 92%), 68 (69%) said they took account of the client’s religion. The two main reasons for not doing so were that religion was considered irrelevant in the decision-making process and that it should be up to clients to initiate such discussions. Midwives’ own religious backgrounds were independent of whether they paid attention to the clients’ religious backgrounds. Eighty midwives (82%) said they did not counsel Muslim women differently from other women. Although midwives with relatively many Muslim clients had more knowledge of Islamic attitudes to terminating pregnancy in general than midwives with relatively fewer Muslim clients, the specific knowledge of termination regarding trisomy 21 and other congenital anomalies was limited in both groups.

Conclusion: While many midwives took client’s religion into account, few knew much about Islamic beliefs on prenatal screening for congenital anomalies. Midwives identified a need for additional education. To meet the needs of the changing client population, counselors need more knowledge of religious opinions about the termination of pregnancy and the skills to approach religious issues with clients.

Keywords: Counseling, Islam, Prenatal screening, Termination, Cultural competency, Shared decision-making, Congenital anomalies, Religion


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Background

Counseling on prenatal screeningSince 2007, prenatal screening of congenital anomalies has been offered to all pregnant women in the Netherlands, with more than 80% of pregnant women receiving counseling about prenatal screening from primary care midwives [1]. The number of counseling sessions offered by a fulltime midwife is on average 67 a year [2]. In the Netherlands, prenatal screening follows an opting in system and comprises two non-invasive tests: the combined test to screen for trisomy 21 (Down Syndrome) at 12 weeks of gestation and the second-trimester ultrasound examination to detect structural anomalies at 20 weeks. In cases of a positive screening followed by confirmatory diagnosis, two options are available: termination of the pregnancy before 24 weeks of gestation, or prenatal care focused on the health needs of the fetus and arrangements for postnatal support.

In the discussion on counseling about prenatal screening for congenital anomalies, it is generally accepted that the intended aim is to enable women who wish to be informed about the health of their future child to make an informed choice on the basis of the information they receive [3]. However, what constitutes ‘informed’ is not clearly specified [4]. Some of the literature on genetic counseling suggests that the counseling process should be ‘non-directive’ , and that counselors ought to abstain from making value judgments [5]. This may be interpreted to mean that counseling should be restricted to providing medical information about the anomalies tested for (such as trisomy 21), prenatal screening procedures and their risks, and the available options in the event of positive test results. Previous Dutch studies proposed going beyond ‘non-directive’ counseling, and introduced a shared decision-making model [6,7]. This approach of shared decision-making involves taking into account client’s personal standards and values [8]. Accordingly, Dutch midwives are trained according to a model that has taking the client’s perspective of life into account as its basis. This model, which is abbreviated as “MIMES”, comprises Medical information, Individual choice by the client, Morally sensitive practices, Exploring the client’s values, and Supporting the decision-making [7,9]. Different roles are presented in this model; medical technical expert, advisor and teacher, and counselor in case of exploring values and supporting decision making. The MIMES model identified a number of factors that are relevant in test uptake decisions, including not only well-known factors such as age, parity, family life and personal experience, but also ‘identity markers’ such as ethnicity and religion [10-14]. It is acknowledged that the difficult questions that confront clients in decision-making may be influenced by their religious convictions [15-18]. As the shared decision-making approach prescribes taking the client’s perspective into account, the question arises as to whether asking about client’s religious convictions should also be part of the counseling process. A number of studies

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have answered this question affirmatively [19-23]. One study recommends a client-centered approach that includes concentrating on the cultural background of values, beliefs and behaviors of clients [19]. Other studies underline the role of religion on client decision-making, and suggest the importance of healthcare professionals having some knowledge of religious beliefs and convictions [20-23]. However, several studies have found that healthcare professionals do not possess this kind of knowledge [20,21,23-25].

Islam and aspects of prenatal screeningPregnant women with a Muslim background constitute a substantial part of the clientele of midwives in many western countries. In Islam, bioethical issues regarding decision-making on prenatal screening and termination of pregnancy have been worked out by for example the European Council for Fatwa and Research (ECFR) and the Islamic Organization for Medical Science (IOMS). Fatwas are statements, for instance by the above-mentioned organizations, that have authority and are respected by the average Muslim [26]. Worldwide, Islam has two main streams: Sunni (87-90%) and Shia (10-13%) [27]. Although differences of opinions exist between those streams, the basic principles of Islam are, for the most part, shared. There are small differences between and within both streams about aspects regarding prenatal anomaly screening such as beginning of life, moment of ensoulment and termination of pregnancy [28,29]. According to various Muslim scholars (both Sunni and Shi’ite), terminating pregnancy before the ensoulment is allowed when the life of the mother is in danger, or when the fetus has a serious anomaly [30]. Before the ensoulment, health of the mother could be interpreted in a broad sense as the physical and mental health, and social safety [30]. From the Islamic perspective, ensoulment is an important moment in pregnancy; from this moment on, the fetus is seen as a fully-fledged person. Based on the Prophetic traditions that can be read and interpreted in different ways, Muslim scholars have had different opinions about the timing of the ensoulment. The majority of Islamic theologians and legal experts agree that the ensoulment takes place on the 120th day (17 weeks and one day) after conception. In terms of clinical practice, because gestation is considered to start two weeks earlier, the 120th day translates to 19 weeks plus one day of gestation. A small minority of Islamic scholars believes it takes place on the 40th day after conception (or seven weeks plus five days gestation in clinical practice) [28]. Termination after the ensoulment is seen as a crime against a human being, except when the life of the mother is at stake [28,30]. After the ensoulment, the life of the mother could be interpreted in a narrow sense as the physical and mental health. In 1990, Fatwa Number 4 by the Islamic jurisprudence council of Mekkah al Mukaramah officially confirmed the permissibility of termination of pregnancy in cases of serious anomalies before the 120th day after conception [31-34]. This fatwa is also referred to by non-Muslim authors [17,28,30]. However, women’s reproductive choices regarding an affected child have not only been based on religious convictions; for example, the opinion of a



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medical expert about the severity of a fetal anomaly and life expectations may also influence women’s of couples’ reproductive choices [16,35]. An explanation of the flexible concept of a ‘serious’ anomaly is given by Rispler-Chaim: “the fetus is defective to a degree that it will never develop to live in a dignified normal life” [30]. Down’s syndrome, for example, ranges from mild to very serious forms and most women in our previous study among pregnant Muslim women from Turkish origin did not consider Down’s syndrome in general as severe enough to terminate a pregnancy [18].

In the same study, Muslim women who were interviewed said it would be helpful if midwives knew about the Islamic perspective on the meaning of life when giving prenatal counseling [18]. This view is supported by international literature showing that professional knowledge of religious and cultural backgrounds of their clients is important, but insufficient [8,33,36-38].

Research questionsIn this exploratory study, we investigated the extent to which Dutch midwives believe that they should take the religious background of their clients into account during prenatal counseling, whether they do so themselves and what factors play a role in whether religion is taken into account during counseling. We also explored the knowledge they possess on Islam’s position concerning termination, what factors influence this knowledge, and whether this knowledge differs between midwives who pay attention to the client’s religious background during counseling and those who do not.

Methods

Study designThis exploratory study is part of the DELIVER study. The DELIVER study is a multicenter prospective dynamic cohort study aimed at evaluating primary care midwifery in the Netherlands; its main focus is on quality, organization and accessibility of care. Between September 2009 and April 2011, data were collected from clients and midwives in twenty midwifery practices across the Netherlands by means of questionnaires, diaries with work-related activities, client records kept by the midwives and the linked data from the Netherlands Perinatal Registry. A complete overview of the design of the DELIVER study is given by Manniën et al. [39]. For this study, we used data from the DELIVER study questionnaires completed by clients and the questionnaires completed by midwives. The questionnaire was sent to 108 midwives by mail including a return envelope between March and June 2010. A reminder was sent to non-responders after four weeks. Privacy was guaranteed in accordance with Dutch legislation. Participants’ anonymity was maintained by using anonymous practice

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identifiers. All participants gave informed consent. The design and conduct of the study were approved by the Medical Ethics Committee of the VU University Medical Center Amsterdam.

ParticipantsFor the DELIVER study, twenty of the 519 primary care midwifery practices in the Netherlands were selected by means of purposive sampling, using strata that fulfilled three criteria. The first criterion was the region in which the practice is situated (north, middle or south of the country); the second criterion was the degree of urbanization (rural or urban area) and the third criterion was the practice type (dual or group practice). During the data collection, these practices employed a total of 108 midwives.

OperationalizationThe questionnaire for midwives contained questions about taking the religious background of pregnant women into account within the scope of counseling on prenatal screening (Table 1).

Table 1. Items from the questionnaire completed by midwives about counseling on prenatal screening

Questions about taking the religious background of clients into account

1. Do you think you should take the religious background of pregnant women and their partners into account during counseling? (yes/no)

2a. Do you actually take the religious background of pregnant women and their partners into account during counseling? (yes/no)

2b. If you do not take the religious background into account, what are the reasons why you do not do this?

(multiple answers possible, as well as open-ended)

3a. Do you counsel a pregnant Muslim woman differently to a pregnant non-Muslim woman? (yes/no)

3b. If you counsel in a different way, in what way do you counsel Muslim and non-Muslim differently? (open ended)

Questions about preterm termination of pregnancy with regard to Islam

1. What do you know about termination of pregnancy with regard to Islam? (four statements: true/false)

2. If a termination is allowed, until what gestational age is it permitted under Islam? (open ended or ‘don’t know’)

3. If you do know anything about termination and Islam, what are your sources? (multiple answers possible, as well as open-ended)

4. Do you need or are you interested in (more) education on religion with respect to prenatal screening? (yes/no)



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Data were collected on midwives’ knowledge of preterm termination of pregnancy according to Islam by giving them four statements (one true and three false) with which they could agree or disagree. The statements with an indication of whether they are true or false in brackets were as follows:– Termination is not allowed (false)– Termination is allowed when the health of the mother is in danger (true)– Termination is allowed when the child has Down syndrome (true)– Termination is allowed when the child has severe congenital anomalies (true).

We asked about the latest possible gestational age that termination of a pregnancy is allowed in Islam; where they obtained their knowledge; and whether they would be interested in more education about religion with regard to counseling on prenatal screening tests. Additionally, demographic data were collected, including age, gender, working experience as a midwife (number of years), and religion (Roman Catholic, Protestant, Muslim, Jewish, Buddhist, Hindu, humanist, none, did not know/would not say). In order to determine the proportion of the client population from various religious backgrounds at each of the twenty participating midwifery practices we used information from corresponding clients’ questionnaires that had been collected separately at each practice.

AnalysisInformation on the religious backgrounds of the clients in each practice was linked to the midwives’ questionnaire by an anonymous unique identifier. Descriptive statistics were used to summarize:– Background characteristics of the midwives in the sample in comparison with all midwives

in the Netherlands;– The proportion of Muslims as well as religious clients per practice;– The extent to which midwives took the religious background into account during counseling;– Reasons for not taking the religious background into account;– Reasons for counseling Muslim women differently to non-Muslim women;– Knowledge about terminating pregnancy according to the Islam.

During preparatory analyses, dichotomous variables were constructed representing the religious background of the participating midwives (yes: Protestant, Catholic and Muslim versus no: none and humanist), low (<9%) versus high (≥9%) percentage of Muslim clients, interested in or in need of additional information (yes versus no and do not know).

The responses of midwives who claimed to pay attention to the clients’ religious background were compared to midwives who did not make that claim. Furthermore, the years of

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experience, age, midwife’s religious background (yes/no) and clients’ religious background (yes/no) of midwives who claimed to pay attention to the clients’ religious background were compared to midwives who did not make that claim.

A variable was constructed representing accuracy of knowledge about terminating pregnancy in Islam by using a sum score of correct answers to four statements, ranging from zero to four; the statements are presented above. This number of correct answers was compared across midwives with (or without) a religious background, across those who did and did not pay attention to the client’s religious background, and across practices with low and high percentages of Muslim clients. The independence between categorical variables was tested by means of χ2 tests. For comparisons across categorical or non-normally distributed variables, the non-parametric Mann–Whitney U test was used. The sizes of groups being compared could not be pre-specified, so statistical power is dependent on the variable used to define the subgroups. For all hypotheses, a significance level of 5% was chosen. SPSS (version 16) was used to analyze the data. Missing data for each variable of interest were pairwise deleted.

Results

ParticipantsThe questionnaire was completed by 99 of the 108 midwives (response rate 92%). One questionnaire was excluded from the analyses because the midwife is the principal investigator, yielding a net response rate of 98 / 107 = 92%. At least one midwife per practice completed the questionnaire. Table 2 shows characteristics of the 98 midwives. The percentage of Muslim clients in the practices varied from 0% to 29.2%, median 3.4%. Three of the twenty practices had more than 9% Muslim clients, accounting for 18 of the 98 midwife respondents.



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Table 2. Demographic characteristics of the study population (N=98)

Sample of MidwivesN (%)

Age Median: 34.5 years; missing: 1<40 years: 56 (57%)>55% years: 6 (6%)

Gender Male: 1 (1%)Female: 97 (99%)

Work Experience ≤ 5 years: 28 (29%)6-10 years: 20 (20%)≥ 11 years: 50 (51%)

Religion Roman Catholic: 13 (16%)Protestant: 16 (20%)Muslim: 1 (<1%)Humanist: 2 (<1%)None: 47 (59%)Don’t know/would not say: 1 (<1%)Missing: 18

Accounting for religious backgroundTable 3 shows that 74 midwives (75%) stated that attention should be paid to the religious background during informing and counseling on prenatal screening, but 67 midwives (68%) reported actually paying attention to the religious background. The seven midwives with discordant responses mentioned two main reasons for not paying attention: firstly that they only pay attention when clients mention their religion; and secondly that religion slips their minds during counseling.

Table 3. Client’s religious background taken into account by midwives during counseling on prenatal screening

Actually pay attentionYes No Total

Should pay attention Yes 67 (68%) 7 (7%) 74 (75%)No 1 (1%) 23 (24%) 24 (25%)Total 68 (69%) 30 (31%) 98 (100%)

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Table 4. Reasons of midwives for not taking the client’s religious background into account during prenatal counseling (N=30)

Reasons Number* Survey-supplied reasons (closed)- Not enough time for counseling 0- Religion is irrelevant 13- It is stringent, difficult or stressful 0- Not aware of this possibility 3- Dutch privacy legislation prohibits data processing about religious

backgrounds2

Respondent-supplied reasons (open-ended)- The onus is on the client to bring religion into the discussion- It is not necessary because of the autonomous decision of the client

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- You have to approach every client as equal 3- Only if the client hesitates about their decision- Only in relation with the choice to terminate

11

* respondents were allowed to select more than one option

Thirty midwives (31%) indicated that they did not actually pay attention to the religious background of the clients when counseling on prenatal screening. The main reasons as selected from pre-set multiple choice answers and open-ended answers were (Table 4): ‘religion is irrelevant in decision-making on prenatal screening’ (n = 13); the onus is on the client to bring religion into the discussion (n = 10); and ‘such discussion is not necessary because of the autonomous decision of the client’ (n = 7).

Eighty midwives (82%) said that they did not counsel Muslim women differently from women with other religious backgrounds (or none). Eighteen midwives (18%) indicated that they counsel Muslim women differently. Four said they do so because of cultural and language differences. Eight midwives indicated that they counsel Muslim women in a different way, stating that they explain that choosing to have prenatal screening tests does not necessarily mean choosing termination if the result is unfavorable (n = 2); that they start the counseling with the possibility of termination (n = 4); or that they take the religion into account at the beginning of the counseling (n = 2). One midwife told women who would not consider terminating the pregnancy that the screening tests are not useful.

The percentage of clients with a religious background did not vary significantly between midwives who did or did not pay attention to the religious background during counseling (Mdn = 40.8 and 35.8 respectively, p = 0.54), nor was paying or not paying attention related to the length of the counselors’ experience (Mdn = 9 and 14 years respectively, p = 0.19).

Furthermore, midwives’ own religious backgrounds were independent of whether they paid attention to the clients’ religious backgrounds (χ2 (1) 0.85, p = 0.36). Midwives who did not



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pay attention to the client’s religious background were older (Mdn = 42) than those who did pay attention (Mdn = 33; p = 0.07); there was not enough statistical power to interpret this outcome as significant. An analysis by gender was not performed, because there was only one male midwife.

Knowledge of termination allowance in IslamMidwives’ accuracy of knowledge on the Islamic perspective on termination is shown in Table 5. Seventeen participants thought that Islam did not allow termination under any condition. Two participants (2%) answered all four statements correctly and 25 participants (25%) answered none of the statements correctly; the median of correct answers given is one.

Table 5. The number (percentage) of participants who correctly answered the statements about permissibility of termination from an Islamic perspective

Statements Midwives with <9% Muslim clients (N=88)

Midwives with ≥9% Muslim clients (N=18)

Total (N=98)

correctly answeredN (%)

correctly answeredN (%)

Termination is not allowed (false) 56 (70) 15 (83) 71 (72)Termination is allowed when the health of the mother is in danger (true)

22 (28) 13 (72) 35 (36)

Termination is allowed when the child has Down syndrome (true)

2 (3) 1 (6) 3 (3)

Termination is allowed when the child has severe congenital abnormalities (true)

11 (14) 1 (6) 12 (12)

Eighty-one midwives (83%) indicated that they have no knowledge about the latest possible gestational age to terminate a pregnancy with regard to Islam. Of the other seventeen participants (17%), none gave the correct answer of 40 or 120 days after conception, that is 9 weeks plus one day or 19 weeks plus one day of gestation. The given answers ranged from 6 to 24 weeks of gestation. Midwives’ knowledge about Islamic attitudes to termination came from diverse sources, such as pregnant women (n = 7), a colleague (n = 4) or a course (n = 1); one midwife is Muslim herself. None of the midwives answered ‘media’ or ‘midwifery education’ , which were available options. Sixty-five per cent of the responding midwives were interested in additional education about Islamic religious beliefs with respect to counseling on prenatal screening tests of congenital anomalies. Twenty percent of the midwives were not interested in additional education and 14% had no opinion.

Midwives from practices with a lower percentage of Muslim clients had fewer correct answers regarding Muslim beliefs compared to midwives whose practices cared for a higher proportion

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of Muslim clients (Mdn = 1.0 and 2.0 respectively, p = 0.02). There was no difference in the number of correct answers between midwives with a religious background (Mdn = 1) and midwives without a religious background themselves (Mdn = 1, p = 0.45). No difference in the number of correct answers was found between the midwives who paid attention to the clients’ religious background (Mdn = 1) when counseling on prenatal screening tests and midwives who did not (Mdn = 1, p = 0.82).

Discussion

Although several studies emphasize the importance of considering religious convictions in decision-making on prenatal screening [15,17], our exploratory study of Dutch midwives shows that a substantial number (31%) do not pay attention to the religious background of their clients. Reasons for not paying attention to the client’s religious background can be categorized into normative and non-normative reasons. Some of the latter are indicated by an American study arguing that healthcare professionals lack enough time to discuss these matters, and often feel uncomfortable doing so [20]. It should be noted that none of the midwives in our study mentioned these non-normative reasons for not including clients’ religious convictions as part of their prenatal counseling. Lack of time might not be an issue for Dutch midwives, as prenatal screening has been included in the standard prenatal care in the Netherlands and midwives can add 15 billable minutes to the time available for each client. The same American study confirmed our findings that healthcare professionals’ own religious background or their length of experience were not factors that influenced whether they discuss religion with their clients [20]. In the Dutch situation, the above factors can be expected to be comparable. The introduction of counseling for prenatal screening in midwifery practice was only three years ago, and all midwives received the same training in the MIMES model, teaching them the importance of the client’s values and beliefs in decision-making on prenatal screening. Regardless of their own convictions, midwives were taught that addressing their clients’ religion is part of what is involved in the shared-decision making approach. The number of years of experience does not therefore genuinely reflect midwives’ counseling experience.

In our study, midwives who did not pay attention to the client’s religious background did so for normative reasons. Some midwives rejected paying attention to religion by underlining the client’s autonomous decision-making; some respondents felt that religious convictions are irrelevant in prenatal screening decision-making; and others stated that they only pay attention to religion when clients themselves bring it up. These normative reasons for not taking religion into account in prenatal counseling fall on different points along a spectrum of non-directive approaches to counseling; with abstention from discussion at one end (a



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stronger claim) and restricting discussion of religion to the client’s initiative at the other (a weaker claim).

Rejecting the stronger claim, we argue for the value of a client-centered and shared decision-making approach for the clients. This approach involves providing relevant information and discussing this information from the perspective of the client’s personal values and beliefs. In this context, it can be suggested that sharing and discussing the client’s own perspective is actually enhancing their autonomy, as has been argued persuasively from the perspective of care ethics [40,41]. The argument for rejecting the weaker claim is ultimately the same. While this view is compatible with recognizing the importance of discussing the client’s religious background, it fails to acknowledge the nature of a shared decision-making process, and advocates a passive role for the care provider. Both approaches can thus be seen to be incompatible with shared decision-making; the approach that is endorsed by the midwifery prenatal screening program and is integrated in the MIMES training program.

The next point is that our exploratory study indicated that the participants had little knowledge about the termination of pregnancy according to Islam in the case of congenital anomalies. Although the midwives with a higher percentage of Muslim clients (more than 9%) had more knowledge of Islamic attitudes to terminating pregnancy in general than the midwives with a lower percentage of Muslim clients, the specific knowledge in both groups of termination with regard to trisomy 21 and other congenital anomalies was limited. No midwives in our study knew the latest day of legitimate termination as taught by Islamic sources. Starting from the first day of the last menstrual period, the last day of legitimate termination is nineteen weeks plus one day of gestation, which is one week before the second-trimester ultrasound is offered in the Netherlands. This means that, for a Muslim woman living in the Netherlands who is guided by her religious beliefs regarding the moment of ensoulment (120 days after conception) information indicating a serious anomaly resulting from routine second-trimester ultrasound screening will be received too late to inform her choice regarding continuation of the pregnancy. Similarly, previous studies showed that not all pregnant Muslim women themselves have sufficient knowledge of the rulings of their own specific tradition on termination in the case of a congenital anomaly [18,35]. Neter et al. observed similar findings and argued that midwives, in their role as counselors, are expected to inform Muslim women about prenatal screening tests and to discuss the possibility of termination if it comes to a fetus with serious anomalies [37]. In an Egyptian study, the fatwa that permits termination in case of a serious anomaly up to 120 days after conception was discussed with couples at risk of fetuses with thalassemia. After these in-depth counseling sessions, all mothers with confirmed thalassemia fetuses opted to terminate their pregnancies [42]. This suggests that, within their system of beliefs, the mothers may opt for termination. The latter two studies

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underline the importance of taking clients’ religious backgrounds into account in order to enhance client autonomy as part of a shared decision-making model. Many researchers believe that a prerequisite for counseling on prenatal screening is sufficient knowledge of the cultural and/or religious background of the client’s values and beliefs [23,25,33,36-38]; this is particularly important when termination of pregnancy is considered [36,37]. A qualitative Canadian study found negative experiences among immigrant Muslim women as a result of insensitivity and lack of knowledge on the part of their prenatal care providers about their religious and cultural background [25]. Hasnain et al. investigated provision of culturally appropriate and client-centered care to Muslim women in the US and they recommended education for healthcare professionals focused on basic religious and cultural beliefs of Muslim women [23]. Furthermore, our study also found that the majority of counselors (65%) needed additional education about religious beliefs with respect to counseling on prenatal screening tests for congenital anomalies. This education is required for a meaningful implementation of the shared decision-making approach.

As far as we are aware, this is the first study to ask midwives if they pay attention to the client’s religious background in their role as prenatal counselors. This study is also the first to explore counselors’ knowledge about termination from a specific religious (Islamic) perspective. A particular strength of the study is the high response rate of 92%; however, the external validity may be questioned because of the selected sampling of midwifery practices that were included, and the reliability may be questioned because of the small overall numbers. In particular the results of the subgroups analyses include very small numbers and limit the generalizability of these findings.

There are some recommendations for further research. In our exploratory study, midwives reported on their own behavior for taking account of the client’s religious background. The question is whether their reports would be confirmed by other, more objective, research methods like video-taped counseling sessions. Further research with a larger sample size and unselected sampling will be important to enhance the generalizability of the results. A client-centered and shared decision-making approach to prenatal counseling warrants additional research that investigates the views and experiences of pregnant women and their partners. Finally, additional research may be warranted to assess what is to be considered as sufficient knowledge about religious aspects and how this should be included in professional education and training.



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Conclusion

One-third of the midwives did not pay attention to the religious background when informing and counseling clients about prenatal screening tests for congenital anomalies. Furthermore, midwives had limited knowledge of termination according to Islamic beliefs and identified a need for additional training. In order to meet the needs of the changing client population, midwives in the context of the broader healthcare system need more detailed knowledge about religious beliefs. At the care provider level, more attention should be paid to the religious background of clients during counseling in order to improve shared-decision making on prenatal screening for congenital anomalies. At the systems level, within the Netherlands and in the case where the fetus does have a serious congenital anomaly, women from the largest non-western religion (i.e. Islam) have limited access to the option of terminating the pregnancy, because of the timing of the second-trimester ultrasound. Revision of the timing of this ultrasound examination should be considered.

Competing interestsThe authors declare that they have no competing interests.

Authors’ contributionsJG, JM, HR and MG developed the questionnaire. JG and JM conducted the coding of open answered questions and JG, LG, and NV conducted the statistical analyses. TK initiated and coordinated the DELIVER study. EH supervised the DELIVER study and the current study. JG drafted the manuscript, and all authors read and corrected draft versions of the manuscript and approved the final manuscript.

AcknowledgementsThis study was funded by the Midwifery Academy Amsterdam Groningen (AVAG) and by the Royal Dutch Organization of Midwives (KNOV) Scholarship 2012. The AVAG was involved in the study design; there was no involvement of the funders in the data analyses, manuscript preparation and publication decisions.

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39 Manniën J, Klomp T, Wiegers T, Pereboom M, Brug J, Jonge A de, Meijde M van der, Hutton E, Schellevis F, Spelten E. Evaluation of primary care midwifery in the Netherlands: design and rationale of a dynamic cohort study (DELIVER). BMC Health Serv Res 2012;12:69.

40 Emanuel EJ, Emanuel L. Four models of the physician-patient relationship. JAMA 1992;267:2221-2226.

41 Tauber AI. Patient autonomy and the ethics of responsibility. Cambridge: MIT Press; 2005.42 El-Beshlawy A, El-Shekha A, Mamtaz M, Said F, Hamdy M, Osman O, Meshaal S, Gafaar T, Petrou

M. Prenatal diagnosis for thalassemia in Egypt: what changed parents’ attitude? Prenat Diagn 2012;32:777-782.

Chapter 7General discussion

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The overall aim of this thesis was to gain insights into the role that pregnant women’s religious backgrounds have in their decision whether or not to have the prenatal anomaly screening tests, the combined test (CT) and the fetal anomaly scan (FAS). The first aim of the thesis is to determine what factors are associated with the uptake of both prenatal anomaly screening tests. The second aim is to explore aspects of pregnant Muslim women’ s views on life and religious beliefs that they say are relevant for their decision-making, and to explore what pregnant Muslim women’s see as appropriate counselling on prenatal anomaly screening, also in the light of their religious beliefs. The third aim is to explore the extent to which counsellors take the religious background of their clients into account and to explore their knowledge about termination according to Islamic beliefs.

Brief summary of the findings

The mean uptake figures for the CT and FAS among the study population were 23% and 90% respectively (Chapter 2). Factors independently associated with the CT uptake were age, religious (Protestant) background, ethnicity, income, parity and region. Factors independently associated with the FAS uptake were religious (Islamic or Protestant) background, income, education and parity. Significant differences between CT and FAS uptakes amongst the twenty midwifery practices can be seen in the range of 4% to 48% for the CT uptake and 62% to 98% for the FAS uptake.

One year after the implementation of the screening programme in the Netherlands, interviews among pregnant Muslim Turkish women demonstrated that women’s views on life, disability and termination were key in decision-making on prenatal anomaly screening (Chapter 3). Women viewed life, including disabled life, as sacred and ‘God-given’, and did not consider termination as an option in the case of a congenitally affected child. Women mentioned contraception as the way of preventing the birth of a disabled child. Hardly any of the women knew the aim of the FAS. Five years after the implementation of the screening programme, interviews among pregnant Muslim Moroccan women demonstrated that their views on termination were more clear-cut regarding opting for the CT (Chapter 4). These views on termination were based on their individual religious beliefs, and were inseparably linked with their views on disability and on the value of life. Additionally, motherhood was the lens through which women looked at the decision whether or not to have the screening tests. Women approached the CT and the FAS entirely differently. Less than half the women knew the aim of the FAS. Women stressed the importance of taking their own individual decision as in the end they were accountable for their choices.

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Pregnant Muslim Moroccan women preferred counsellors who: 1) accurately inform them about the test procedures and the anomalies that could be detected; 2) initiate discussions about moral topics, such as disability and termination, and their relationships with their individual values and beliefs with the aim of helping them to make their own autonomous decision; 3) know about Islamic beliefs regarding the value of life, disabled life and termination (Chapter 5). Furthermore, women also wanted to be treated respectfully as individuals and not as the clichéd submissive Muslim woman.

Two thirds of the participating counsellors stated that they did actually pay attention to the client’s religious background (Chapter 6). The two main reasons for not doing so were that religion was seen as unrelated to client’s decision-making process, and that the onus was on the client to bring her religion into the counselling dialogue. The participating midwives had limited knowledge about the termination of pregnancy according to Islamic doctrines.

General discussion

For a general discussion we will take a broader look at the findings and conclusions of the five studies together regarding decision-making on and counselling for prenatal anomaly screening. Five subjects will be discussed: 1) registration of CT and FAS uptake, 2) ‘escaping your fate’, 3) different approaches to decision-making between the CT and the FAS, 4) religion in the public domain, and 5) new developments in prenatal anomaly screening.

1. Uptake of the CT and FAS: importance of national registrationWe examined which socio-demographic factors were associated with the uptake of prenatal congenital anomaly screening tests in a low-risk population. This provided a unique insight into the similarities and differences between the uptakes of the two tests in the study. The results demonstrated that religion is one of the independently significant factors associated with CT and FAS uptake (Chapter 2); later in the discussion, the differences in CT and FAS uptake will be explained by differences in the decision-making approaches used by Muslim women. The added value of our study compared to other Dutch studies in prenatal anomaly screening is twofold [1-4]. Firstly, our study is the first that gained insights into factors associated with the FAS uptake and compared the outcomes to factors associated with the CT uptake. Secondly, our study is the first study that examined the uptake of the CT and FAS nationwide [5]. Our study among primary care midwifery practices reveals differences in CT and FAS uptake among the four regions in the country; furthermore, our study reveals huge differences in the CT and FAS uptake among the midwifery practices involved in the study. So, in addition to client-related socio-demographic factors associated with the CT and FAS uptake, midwifery practices also influenced clients’ participation in the CT and FAS. The latter


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could imply an inequality of access to the tests. After all, clients’ decisions whether or not to have the tests may be related to how they are offered, which makes our findings relevant for policy development. Moreover, in a video observational study of counselling for prenatal anomaly screening, Martin et al. found clustering of data among counsellors; it is therefore likely that the CT and FAS uptake is more dependent on particular counsellors than on the particular midwifery practices that offer the tests [6]. Further research is needed to examine this hypothesis and the underlying causes, and nationwide registration of the actual CT and FAS uptake could be a helpful tool. In this regard, it is important to note that self-reported uptake by pregnant women is probably not the most reliable method for collecting data. We therefore plead for a reliable method that represents the actual uptake of the CT and FAS nationwide. Since 2011, Peridos has registered all CT and FAS examinations performed nationwide in the Netherlands. However, this system is not yet functioning as well as it could; the latest report showed that Peridos covered less than 10% of all pregnancies and is thus not a reliable representation of the uptake practice in the Netherlands [7].

2. Different approaches to decision-making between the CT and the FASThe significant differences in the deliberations and decision-making of the Muslim women interviewed between having the CT and the FAS translates not only into a relatively low CT uptake and a relatively high FAS uptake, but also into questionably informed choices about the FAS. It seems that having the CT is on an opt-in basis whereas having the FAS uses an opt-out approach.

The Muslim women interviewed saw the CT as a deterrent test and they deliberated extensively about whether or not to have it. Being able to terminate a pregnancy in the case of a child with Down’s syndrome resulted in deliberations about disability and termination linked to women’s religious beliefs, and seemed to be the reference point for whether or not to participate in the CT programme. As in other Dutch studies, hardly any of the women interviewed thought Down’s syndrome was severe enough to terminate and these views on Down’s syndrome were reflected in a low CT uptake [4,8]. Conversely, the women interviewed hardly deliberated whether or not to have the FAS and saw it as “a nice opportunity to see the baby”. This was reflected in the high uptake of the test. And the option to terminate an affected pregnancy was not considered at all in decision-making about participation in the FAS programme. The result that one of the main reasons for pregnant women taking the FAS is the opportunity to see their child is confirmed by several other studies [9-13]. Additionally, in the Netherlands the FAS is generally the only second trimester scan and the last scan in prenatal care, which makes the FAS particularly attractive. The fact that women mainly participate in the FAS because they want to see the baby does not necessarily have to be problematic. What should be regarded as problematic, however, is that clients’ knowledge of

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the aim and voluntary nature of the FAS and the options after diagnostic tests is insufficient [14-18]. In that case the decision-making is arguably not based upon an informed choice. A striking point was our finding that hardly any of the women interviewed knew the purpose of the FAS, even five years after the implementation of the screening programme. Therefore, to enable clients to make informed reproductive choices, counsellors should ensure that their clients fully understand the aim and possible consequences of the tests [19]. Taken as a whole, all the findings listed above give the impression that participation in the CT appears to be the result of an opt-in approach. Conversely, participation in the FAS programme appears to be the result of an opt-out approach, which contradicts the policy on prenatal anomaly screening (aiming for an opt-in approach) [14,15]. An explanation of the opt-out approach for the FAS may probably be found in the counsellors, who give pointers as to whether or not to take the FAS. Although the FAS was offered during the study period only as a scan to detect structural anomalies, fetal and placental measurements happened to be recorded at the same time. Fetal growth measurements and placenta evaluation during the second trimester ultrasound can detect fetal growth restrictions that may cause preterm birth and perinatal death; abnormalities of the placenta may cause serious complications such as fetal growth restriction, preterm birth and preeclampsia [20-23]. Because of this obstetric importance, it is conceivable that midwives in their role as care-givers encourage clients to take the FAS. The daily practice in counselling about the FAS in the Netherlands, in which midwives are the counsellors, reveals a dilemma. On the one hand, counsellors in their role as midwives benefit from their clients participating in the FAS programme in the context of quality of care, because of the obstetric importance prenatally and during labour; therefore, counsellors could be encouraging the FAS in an opt-out approach. On the other hand, those same counsellors have to offer the FAS following an opt-in option and should refrain from giving advice as they should be adopting a non-directive attitude.

3. Decision-making to escape your fate: post-conception or pre-conceptionThe aim of counselling in prenatal anomaly screening as expressed by the Dutch Health Council’s Committee on Genetic Screening is to “enable people to escape their fate by giving them the freedom to make an informed choice and adopt a course of action which they regard as acceptable.” [14]. The word ‘fate’ as used by the Committee (in Dutch: noodlot) has negative connotations and should be read here as a blind, random force of nature that human beings have a natural tendency to want to escape. In contrast, the word ‘fate’ or ‘destiny’ as used by the Muslim interviewees has a religious connotation (in Dutch: lot). The basic profile of the Muslim identifies six official tenets: believe in the One God, angels, the holy books, the prophets, the afterlife and providence [24]. The Islamic image of God is based on these six tenets of faith, part of which is that God is the creator of Man and the universe; God creates, supervises and intervenes in human life, from the foetus through to passing


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away, and creates the human responsibility for dealing with this life [24]. The Islamic meaning of ‘fate’ is usually interpreted as God’s plan for your life, and may entail both ‘good’ things as a blessing and ‘bad’ things as a test [25]. From an Islamic perspective, the task of raising a child with an anomaly is part of your destiny and disabilities or anomalies are viewed as part of the human condition that some people have to face. At any rate, it is not seen either as a curse or as a divine punishment for the sins of the parents [25-27]. Finally, in monotheistic religions such as Islam motherhood per se is viewed as a blessing and reproduction is taken to be a divinely designed duty [28,29], which is just as valid if the child you are carrying has a disability.

The background of Islamic beliefs outlined above is linked to the ethical notion that decision-making on prenatal anomaly screening during pregnancy and avoiding the births of disabled children is problematic [30]. Prevention of an affected fetus is impossible, which leaves preventing the birth of an affected child by termination of pregnancy as the only option. From the perspective of motherhood, Islamic women generally view termination of pregnancy as illegitimate killing of their child; the same view is held by many orthodox Jewish and Christian women. On the other hand, preventing disabled children being born is not considered as problematic in the pre-conception phase; the use of contraception can be a legitimate way of preventing the conception of a congenitally affected child. The women interviewed emphasised that it is a woman’s responsibility to prevent pregnancy if she doesn’t want to have a (disabled) child, and they proposed the opportunity of family planning. Remarkably, when speaking of contraception, women used the word ‘protection’ instead of ‘contraception’. ‘Protection’ is a term that indicates one side of the religious ambiguity of carrying a child with a disability. It is a bad thing that can happen, and protecting yourself against it at the pre-conception stage is not a religious offence. Should it nonetheless happen, however, it will be regarded at the post-conception stage - at least among Muslims - as a divinely ordained task. To enable people in their fertile phase of life to make informed choices in this regard, it is important to inform and educate young people at an early stage about genetic diseases, genetic screening and prenatal anomaly screening [14,31].

In the context of carrying a child with a disability, two important footnotes have to be mentioned about Muslim women’s predominant view that termination is forbidden by Islam. Firstly, Islamic rulings permit termination of pregnancy in cases of confirmed serious anomalies before 19 weeks plus one day of gestation [32]. Recently Muslim scholars in embryology and neonatology recommend that affected fetuses should be detected at the earliest possible point in pregnancy to enable Muslim women to terminate pregnancy before 19 weeks’ gestation [33]. To enable Muslim women in the Netherlands to make informed choices, the timing of the FAS should be reconsidered. If it is performed around 17 weeks’ gestation, the option of termination may only be open for two more weeks.

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Secondly, Muslim women can also consider a termination for personal or medical reasons, i.e. aside from religious beliefs [34,35]. Our findings therefore lead to a recommendation that, in order to facilitate decision-making based upon informed choices, counsellors should at least have some elementary knowledge of Islamic beliefs about moral issues regarding decisions on prenatal anomaly screening.

4. Counselling: religious beliefs in the public domainAs values and beliefs are the key components when clients decide whether or not to participate in prenatal anomaly screening programmes, this implies – in the case of religious values and beliefs – that counselling for prenatal anomaly screening constitutes an example of how religion impinges upon prenatal care services within the public domain. As this study has shown, exploring clients’ values and beliefs is officially acknowledged in this context as one of the three counselling functions when offering decision-making support [17,19,36]. For client-centred counselling of religious women or couples, this means that taking clients’ religious background into account is not optional for the counsellors.

About one third of the counsellors in our study did not take the client’s religious background into account during counselling. There were two main reasons for this (Chapter 6). The participating midwives felt firstly that religion is irrelevant in decision-making about anomaly screening and secondly that if clients think their religious values and beliefs are relevant, it is their own responsibility to make them known and they can then be taken into account. One rationale for counsellors’ opinion that women should initiate the discussion on religious beliefs could be that they viewed discussions related to religious beliefs as inappropriate in midwifery care. For decades the prevailing opinion in Dutch society has been that the role of religion is being pushed back from the public domain into the private domain [37]. However, at the time of the implementation of the prenatal anomaly screening programme, a resurgence of religion in the public domain was identified; it was therefore not surprising that counsellors in our study who take clients’ religious background into account were younger than those who did not pay attention to it [37].

Another rationale for the older generation of counsellors maintaining that the onus is on the woman to bring religion into the discussion could be that they felt unfamiliar or uncomfortable discussing topics related to religious beliefs because they lacked the relevant knowledge about Islamic beliefs. While questions such as “Are you a believer?” followed by “What would religion mean to you in the context of prenatal screening tests?” may not feel familiar to these counsellors, they could be helpful to start the discussion on the role of religious beliefs in decision-making on prenatal anomaly screening.


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At the very least, this thesis demonstrates the important role of religious beliefs in Muslim women’s decision-making about prenatal anomaly screening. In view of this finding, the secular opinion of a substantial proportion of the counsellors involved in the study – saying that religious beliefs are irrelevant to decisions on prenatal anomaly tests – is debatable, given the fact that 50% of the Dutch population have a religious background [38]. Greater reason for concern, however, is the recent finding by Martin et al. that of 1416 Dutch midwives, only half felt clients’ standards, values and views to be important [6]. Because addressing their values and beliefs is acknowledged to be inherent to clients being able to make decisions based on informed reproductive choice, this task should not be subject to counsellors’ personal convictions, but is part of their professional task. In order to facilitate informed reproductive choice in a client-centred approach, it therefore follows that counsellors cannot dismiss the question of how to initiate discussion of religious beliefs, as this turns out to be part of exploring clients’ values and beliefs.

The study described in this thesis explored whether counsellors said that they take clients’ religious backgrounds into account, as well as exploring the reasons for not doing so. Because it was based on a questionnaire, the study did not involve direct observations of whether and how counsellors take the client’s religious background into account in daily practice. As part of the DELIVER study, however, over 300 counselling consultations were videotaped in six primary care midwifery practices distributed throughout the country [39]. Preliminary results of the video observational study show that counsellors took clients’ religious backgrounds into account in only 5% of the videotaped counselling sessions, whereas approximately 50% of the clients had a religious background. These preliminary results suggest that counsellors probably take the client’s religious background into account much less in daily practice than the self-reported figure for paying attention to the client’s religion during counselling, i.e. approximately two thirds in our exploratory study.

5. Recent developments in the practice of prenatal anomaly screeningIn April 2014, the Non-Invasive Prenatal Test (NIPT) was added to the prenatal anomaly screening programme in a nationwide study setting [40]. During the study, pregnant women can only choose to have the NIPT when the result of the CT has shown a risk of 1 in 200 or higher for trisomy 13, 18 or 21 (see Chapter 5, Figure 1). Another change in the Dutch prenatal anomaly screening programme is that from January 2015 onwards, all pregnant women (irrespective of age), who choose to have the CT will have to pay 160 euros for the CT out of their own pockets [41]. The implicit message of all women having to contribute seems to be that current thinking – that women under 36 are hardly at risk of becoming pregnant with a child with Down’s syndrome – has become obsolete. On the other hand, this co-payment could create a barrier to all women against having a CT (Chapter 2). The rate of

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CT uptake will then be influenced by women’s social economic status, which might result in inequality of access to the CT (Chapter 2). Research has shown that women will be more likely to choose the NIPT than the CT [42], but at present women must take the CT first before they can opt to take the NIPT. If it turns out that the rate of CT uptake decreases among older women because of the co-payment, the number of children born with Down’s syndrome might be expected to increase. Whether or not this effect will actually occur remains to be seen however. After all, whether or not to terminate a congenitally affected pregnancy will remain the most important question to future parents, both religious and non-religious.

To conclude

Values and beliefs based on women’s religious backgrounds play a role in deciding whether or not to have the CT, but they do not play a role in the FAS. Pregnant Muslim women of Turkish and Moroccan origin prefer counsellors to initiate exploring and discussing women’s values and beliefs about participation in anomaly screening programme, thereby aiming to facilitate informed reproductive choice. While many midwives said that they do take the client’s religion into account, counsellors need more knowledge of religious views related to decision-making on anomaly screening and the skills to approach religious issues with clients. As women’s religious values and beliefs are relevant in their decisions on participation in anomaly screening programmes, and because women prefer counsellors who address their values and beliefs, religion has a place not only in the private domain, but also in the public domain, such as counselling for prenatal anomaly screening in healthcare.

Recommendations

As a result of our findings, we propose a set of recommendations for counselling practice. We recommend that counsellors:

- ensure that their clients fully understand the aim of the test and the test procedures;- initiate discussion on clients’ religious beliefs during decision-making support;- avoid stereotyping based on religion or ethnicity and are aware of individual choices,

and thus tailor counselling to the individual client.Recommendations for midwifery training are education about religious beliefs regarding the value of life, unborn life, disabled life and termination. These are needed for a meaningful implementation of the client-centred approach to counselling for prenatal anomaly screening. We also recommend training to explore clients’ values and (religious) beliefs relating to making decisions about anomaly screening. To let Muslim women make informed choices, we recommend a revision at the policy-making level of the timing of the FAS, prior to 19 weeks of gestation.


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Future research

Our nationwide study revealed a large range in the CT and FAS uptakes among the practices; to ensure that every woman has equal access to prenatal anomaly screening, future research is needed to uncover the underlying causes. Research among Muslim women who decline the FAS is needed in order to understand their reasons for not having the FAS. To meet the needs of religious women, further research is needed as to why some midwife counsellors do not see religious beliefs as a relevant component in clients’ decision-making during antenatal counselling.

We hope that the present thesis will contribute to the discussion about offering prenatal anomaly screening tests in a multicultural but secular society in which people of different religions participate. The thesis could also contribute to rethinking the role of professionals in client-centred healthcare with regard to the recognition of religious and ethnic diversity.

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Chapter 8Summary & Samenvatting

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Chapter 1 General introduction The general introduction describes the rationale and aims of the present study. Prenatal anomaly screening has been offered to all pregnant women in the Netherlands since 2007. The screening comprises two non-invasive tests: the Combined Test (CT) at twelve weeks’ gestation and the Fetal Anomaly Scan (FAS) at twenty weeks’ gestation. The CT is a risk assessment for Down’s syndrome, Edwards’s syndrome and Patau’s syndrome (trisomies 21, 18 and 13 respectively). The FAS is an ultrasound for detecting structural anomalies. The aim of a prenatal anomaly screening programme is to offer future parents the option of an informed reproductive choice. Whether or not to participate in prenatal anomaly screening tests, the Combined Test (CT) around 12 weeks’ gestation and Fetal Anomaly Screening (FAS) around twenty weeks’ gestation, will partly be based on pregnant women’s or couples’ values and beliefs about life, unborn and disabled life, and termination. After all, the ultimate question for pregnant women or couples is whether they want to know if their future child will have a congenital anomaly, and if so whether they would prefer to raise a child with a disability or to terminate the pregnancy. Religious women’s values are grounded in their religious beliefs. Dutch counsellors’ can be presumed to know about Christian and Jewish perspectives on life, disabled life and termination, but knowledge of Islamic perspectives on issues about deciding whether or not to participate in anomaly screening is not a given. Although midwives are familiar with discussing ritual religious topics such as circumcision with their clients, they are not familiar with discussing moral religious issues and it was not known if midwives take clients’ religion into account in their role as counsellors. Furthermore, the prevailing opinion for decades has been that religion is a declining phenomenon that is being driven out of the public domain and into the private domain. This meant among other things that communication about tests, therapies and treatments in the light of a religious background was no longer self-evidently part of the interaction between the professional and the client.

The overall aim of this thesis is therefore to gain insights into the role of pregnant women’s religious backgrounds in their decisions whether or not to have the prenatal anomaly screening tests, the CT and the FAS. The first aim of the thesis is to determine which factors are associated with the uptake of both prenatal anomaly screening tests. The second aim is to explore pregnant Muslim women’s views on life and religious beliefs that are relevant to deciding whether or not to participate in prenatal anomaly screening tests, and to explore pregnant Muslim women’s preferences for appropriate counselling on prenatal anomaly screening. The third aim is to explore the extent to which counsellors take the religious background of their clients into account and to explore their knowledge about termination according to Islamic beliefs.

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Chapter 2 Factors affecting the uptake of prenatal screening tests for congenital anomalies; a multicentre prospective cohort study

We performed a nationwide cross-sectional study to assess factors associated with the combined test (CT) and fetal anomaly scan (FAS) uptake. This study among 5216 pregnant women in twenty midwifery practices in all regions in the Netherlands, part of the DELIVER study, demonstrated a mean uptake for the CT and FAS of respectively 23% and 90%. Factors independently associated with the CT uptake were age, religious background, ethnicity, income, parity and region. Women were less likely to have the CT if they identified themselves as Protestant, were multiparous and living in the Eastern part of the Netherlands. Women were more likely to have the CT if they were older, had a non-Dutch ethnic background and had above average income. Independent factors associated with the FAS uptake were religion, income, education and parity. Women were less likely to have the FAS if they identified themselves as Protestant or Muslim and were multiparous, whereas women were more likely to have the FAS if they had higher incomes and were more highly educated. Because the two tests have the same aim, i.e. detecting anomalies, and offer the same possibilities after a diagnosed affected fetus, i.e. termination of pregnancy or preparing to have a disabled child, we expected that similar factors would be associated with both the CT and FAS. However, age, ethnicity and living in the eastern part of the country were associated with the CT uptake but not with the FAS uptake, and education and being Muslim were associated with the FAS uptake and not with the CT uptake. One striking element was the large differences in CT and FAS uptake among the twenty practices, with a range of 4% to 48% for the CT uptake and a range of 62% to 98% for the FAS uptake. The three practices with the lowest CT and FAS uptake were in the Dutch Bible Belt. In addition to client-related socio-demographic factors associated with the CT and FAS uptake, midwifery practices also influenced clients’ participation in the CT and FAS.

Furthermore, we examined factors associated with uptake of the tests among women with non-Dutch ethnic backgrounds, dividing this subgroup into women with western and women with a non-western non-Dutch ethnic backgrounds. The mean uptake for the CT and FAS among women with a western non-Dutch background was 35% and 94% respectively, and for women with a non-western non-Dutch background 24% and 84% respectively. We found that factors associated with the uptake of the tests differed between these subgroups. For instance, limited proficiency in Dutch was associated with a higher uptake of the CT test among women with a non-western non-Dutch background but did not play a role in the uptake of the CT test among women with a western non-Dutch background.


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Chapter 3 The role of religion in decision-making on antenatal screening of congenital anomalies: a qualitative study among Muslim Turkish origin immigrants

Religious beliefs and individual perspectives on life, unborn life, disabled life and termination are values that can influence women’s decision-making whether or not to participate in prenatal anomaly tests. One year after the implementation of the screening programme in the Netherlands, ten in-depth interviews with pregnant Muslim women of Turkish origin aimed to explore the role of religious beliefs and individual values whether or not to have the CT and FAS. Views on life, disability and termination based on women’s religious beliefs were key in decision-making on prenatal anomaly screening. Women viewed life – including disabled life – as sacred and ‘God-given’ and therefore they did not consider termination as an option in case of an affected child. Women mentioned contraception as the way to prevent the birth of a disabled child. At the time of the interviews, the women were unaware of Islamic jurisprudence regarding permissibility of termination in cases of serious anomalies being diagnosed. Religious convictions played a role in women’s decision-making whether or not to participate in the CT, but the women did not all act in the same way. Although none of the women considered a termination in case of a disabled child, some (four) women had the CT because they wanted to be prepared in the case of Down’s syndrome. All women had the FAS, but hardly anyone knew the aim of the FAS.

Chapter 4 A qualitative study on how Muslim women of Moroccan descent approach antenatal anomaly screening

Five years after the implementation screening programme and four years after the aforementioned study among pregnant Turkish women, twelve open interviews were held with pregnant Moroccan women, aiming to understand how these Muslim women approach prenatal anomaly screening. Two women had the CT and all women had the FAS. As in our study among pregnant women of Turkish origin, pregnant Muslim Moroccan women’s views on termination were more decisive regarding opting for the CT. These views on termination were based on their individual religious beliefs and inseparably linked with their views on disability and on the value of life. Additionally, the privilege of motherhood or becoming a mother appeared to outweigh any perceived burden of bearing a disabled child. Motherhood was the lens through which women approached decision-making on whether or not to participate in the screening tests. Women approached the CT and the FAS entirely differently. The women seemed to view the CT as a deterrent test and the FAS as an attractive ultrasound examination. Nearly all the women thought of the CT as a test that could potentially detect Down’s syndrome, and could result in them being offered termination of the pregnancy; a fact that resulted in their extensive deliberations and hesitation. And although some women were aware of the Islamic ruling that permits termination in cases of serious anomalies before the ensoulment, this ruling did not appear to play a role in the extensive deliberations on

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whether or not to take the CT. In contrast to the CT, women viewed the FAS as an opportunity to see their child, and the decision to take the FAS was not at all focused on the possibility of pregnancy termination after an adverse outcome. Most of all, in deciding whether or not to participate in the CT, women stressed the importance of taking their own individual decision as in the end they were accountable for their choices.

Chapter 5 Antenatal counselling for congenital anomaly tests: pregnant Muslim Moroccan women’s preferences

The same Moroccan women as in the aforementioned study were interviewed to obtain insights into the preferences of Muslim women regarding the content and approach to prenatal counselling for anomaly screening tests and to define women’s preferences for the counsellor’s knowledge of Islamic convictions. The interviewed Muslim Moroccan women preferred a counsellor who would accurately inform them about the test procedures and the anomalies that could be detected, and who put moral topics on the counselling agenda in order to facilitate a deliberate, consciously made and informed choice about prenatal anomaly screening. The interviewees preferred a non-directive approach in the counselling, not wanting to be advised whether or not to take the tests. The women interviewed also preferred a counsellor to initiate discussions about moral topics, such as disability and termination, and their relationships with their own individual values and beliefs, with the aim of empowering them make their own autonomous decision. Women therefore preferred a counsellor who knows Islamic beliefs regarding the value of life, disabled life and termination. The interviewees also preferred to be treated respectfully and as individuals and not as stereotyped Muslim women. Because some women perceived the content of the counselling as somewhat threatening, women also preferred the counsellor to speak clearly and calmly and take plenty of time to reduce anxiety.

Chapter 6 Prenatal screening for congenital anomalies: exploring midwives’ perceptions of counselling clients with religious backgrounds

A quantitative exploring study among primary care midwife counsellors in the twenty participating DELIVER study practices aimed firstly to assess counsellors’ perceptions and practices about taking clients’ religious backgrounds into account during counselling on anomaly screening and secondly to assess counsellors’ knowledge of whether termination of pregnancy is allowed in Islam. Of the 98 participants, 75% said that midwives should take clients’ religious views into account during counselling, and 68% stated that they did actually pay attention to the client’s religious background. The three main reasons for not taking the client’s religious background into account were that religion was seen as unrelated to client’s decision-making process, that the onus is on the client to bring her religion up in the counselling dialogue and that taking client’s religious background into account is not


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necessary because of client’s decision whether or not to participate in the screening tests is autonomous. The participants had some knowledge about the termination of pregnancy according to Islam doctrines. Although the midwives with a higher percentage of Muslim clients (more than 9%) had more knowledge of Islamic attitudes to terminating pregnancy in general than midwives with a lower percentage of Muslim clients, the specific knowledge of termination with regard to Down’s syndrome and other congenital anomalies was limited in both groups. Finally, the majority of midwives (65%) needed additional education about religious beliefs with respect to counselling on prenatal anomaly screening tests.

Chapter 7 General DiscussionFinally, the general discussion of this thesis offers a brief overview of the main findings, discusses a number of higher-level topics related to the main findings and ends with recommendations for practice and further research.

As far as we are aware, our study into the actual uptake of the CT and FAS in the Netherlands is the first nationwide study as well as the first study into factors associated with the FAS uptake. We would like to make the case for a reliable method that represents the actual uptake of both tests nationwide, e.g. properly functioning national registration of the uptake. The Muslim women interviewed showed significant differences between the deliberations and decision-making for the CT and those for the FAS which translates not only into a relatively low CT uptake and a relatively high FAS uptake, but also into questionably informed choices about participating in the FAS. It seems that having the CT is on an opt-in basis whereas having the FAS uses an opt-out approach.

To conclude, values and beliefs based on women’s religious backgrounds play a role in deciding whether or not to have the CT, but they do not play a role in the FAS. Pregnant Muslim women of Turkish and Moroccan origin prefer counsellors to initiate the exploration and discussion of women’s values and beliefs about participation in anomaly screening programme, thereby aiming to facilitate informed reproductive choice. While many midwives in their role as counsellors said that they do take the client’s religion into account, counsellors need to know more about religious views related to decision-making on anomaly screening and need the skills to approach religious issues with clients. As women’s religious values and beliefs are relevant in their decisions about participation in anomaly screening programmes, and because women prefer counsellors who address their values and beliefs, religion has a place not only in the private domain, but also in the public domain, such as counselling for prenatal anomaly screening in healthcare.

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Hoofdstuk 1 Algemene inleidingDe algemene inleiding beschrijft de context en de doelen van de huidige studie. Prenatale screening op aangeboren afwijkingen wordt sinds 2007 in Nederland aan alle zwangere vrouwen aangeboden. De screening bestaat uit twee testen: de combinatietest – een kansberekening op trisomie 21, 13 en 18 – die wordt uitgevoerd rond 12 weken zwangerschap, en het Structureel Echoscopisch Onderzoek (SEO) voor het opsporen van structurele afwijkingen die wordt uitgevoerd rond 20 weken zwangerschap. Het doel van het prenatale screeningsprogramma op aangeboren afwijkingen is toekomstige ouders de mogelijkheid te bieden om een geïnformeerde reproductieve keuze te maken. Het al dan niet deelnemen aan de prenatale screeningstesten wordt mede gebaseerd op de waarden en overtuigingen van zwangere vrouwen of koppels met betrekking tot het leven, het ongeboren leven, het leven met een beperking en zwangerschapsbeëindiging. Immers, de ultieme vraag aan zwangere vrouwen of koppels is of ze willen weten of hun toekomstige kind een aangeboren afwijking heeft, en zo ja, of zij ervoor kiezen om de zwangerschap uit te dragen en een kind op te voeden met een aangeboren afwijking of om de zwangerschap af te breken. De waarden van vrouwen met een religieuze achtergrond zijn geworteld in hun religieuze overtuigingen. Kennis van christelijke en joodse perspectieven op het leven, leven met een beperking en zwangerschapsbeëindiging, kan bij Nederlands counselors verondersteld worden. Maar kennis van islamitische standpunten ten aanzien van vragen over de besluitvorming om al dan niet deel te nemen aan prenatale screening op aangeboren afwijkingen, is niet vanzelfsprekend aanwezig. Hoewel verloskundigen gewend zijn religieuze onderwerpen zoals besnijdenis met hun cliënten te bespreken, zijn ze niet gewend morele religieuze kwesties ter sprake te brengen. Bovendien was het onbekend in hoeverre verloskundigen in hun rol als counselor aandacht besteden aan de religieuze achtergrond van hun cliënten tijdens de counseling. Daarnaast heerste de laatste decennia de opinie dat religie een afnemend fenomeen is, dat uit het publieke domein wordt verdreven naar het privédomein. Dit betekende onder andere dat communicatie over testen, therapieën en behandelingen in relatie tot een eventuele religieuze achtergrond van de cliënt, niet langer een vanzelfsprekend onderdeel was van de interactie tussen de professional en de cliënt.

Daarom is de algemene doelstelling van dit proefschrift inzicht te verkrijgen in de rol van de religie in de besluitvorming van zwangere vrouwen over deelname aan prenatale screeningstesten op aangeboren afwijkingen, de combinatietest en de SEO. Het eerste doel van het onderzoek is te bepalen welke factoren van invloed zijn op deelname aan beide prenatale screeningstesten. Het tweede doel is een verkenning van opvattingen over het leven en religieuze overtuigingen onder zwangere moslima´s in relatie tot de besluitvorming rondom prenatale screening, en van de voorkeuren van zwangere moslima´s voor passende counseling over prenatale screening. Het derde doel is verkennend onderzoek te doen


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naar de mate waarin counselors aandacht besteden aan de religieuze achtergrond van de cliënt en naar de kennis van counselors over zwangerschapsbeëindiging volgens islamitische overtuigingen.

Hoofdstuk 2 Factoren die deelname aan prenatale screening op aangeboren afwijkingen beïnvloeden; een multicenter prospectieve cohortstudie

Als onderdeel van de landelijke DELIVER-studie naar de organisatie en toegankelijkheid van de eerstelijns verloskundige zorg in Nederland, voerden we een studie uit naar factoren die samenhangen met deelname aan de combinatietest en het Structureel Echoscopisch Onderzoek (SEO). Deze studie onder 5216 zwangere vrouwen in twintig verloskundige praktijken in alle regio’s in Nederland toont deelnames aan de combinatietest en de SEO van respectievelijk 23% en 90%. Factoren die onafhankelijk geassocieerd waren met deelname aan de combinatietest, zijn: leeftijd, religieuze achtergrond, etniciteit, inkomen, pariteit en regio. Vrouwen namen minder vaak deel aan de combinatietest indien ze zichzelf identificeerden als protestants, multipara waren en in het oostelijk deel van Nederland woonden. Vrouwen namen vaker deel aan de combinatietest indien zij ouder waren, een niet-Nederlandse etnische achtergrond hadden en een boven gemiddeld inkomen hadden. Onafhankelijke factoren die geassocieerd waren met deelname aan de SEO zijn: religie, inkomen, opleiding en pariteit. Vrouwen namen minder vaak deel aan de SEO indien ze zichzelf identificeerden als protestants of moslim en multipara waren, terwijl vrouwen vaker deelnamen aan de SEO indien zij een hoger inkomen dan gemiddeld hadden en hoger waren opgeleid. Daar de combinatietest en de SEO hetzelfde doel beogen, dat wil zeggen het opsporen van afwijkingen, en dezelfde mogelijkheden bieden na een gediagnostiseerde foetus met een aangeboren afwijking, namelijk zwangerschapsbeëindiging of voorbereiding op het krijgen van een kind met een aangeboren afwijking, hadden we verwacht dat soortgelijke factoren geassocieerd zouden zijn met zowel de combinatietest als de SEO. Echter leeftijd, etniciteit en het leven in het oostelijk deel van het land waren geassocieerd met deelname aan de combinatietest, maar niet met deelname aan de SEO; het opleidingsniveau en het moslim zijn, waren geassocieerd met deelname aan de SEO, maar niet met deelname aan de combinatietest. Opvallend waren de grote verschillen tussen de twintig deelnemende praktijken in deelname aan de combinatietest en de SEO; deelname aan de combinatietest varieerde van 4% tot 48% en deelname aan de SEO varieerde van 62% tot 98%. De drie praktijken met de minste deelname aan beide testen zijn gevestigd in de Bijbelbelt. Naast sociaal-demografische factoren die geassocieerd zijn met deelname aan beide testen lijken individuele verloskundigenpraktijken ook van invloed op participatie van cliënten in de combinatietest en de SEO.

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Verder onderzochten we welke factoren samenhangen met deelname aan beide prenatale testen bij vrouwen met een niet-Nederlandse etnische achtergrond. Daarvoor hebben we een onderverdeling gemaakt in vrouwen met een westerse en vrouwen met een niet-westerse niet-Nederlandse etnische achtergrond. De gemiddelde deelname aan de combinatietest en de SEO bij vrouwen met een westerse niet-Nederlandse achtergrond, waren respectievelijk 35% en 94%, en bij vrouwen met een niet-westerse niet-Nederlandse achtergrond respectievelijk 24% en 84%. Factoren die geassocieerd waren met deelname aan de testen, verschilden tussen de twee subgroepen. Zo was beperkte vaardigheid van de Nederlandse taal geassocieerd met een grotere deelname aan de combinatietest bij vrouwen met een niet-westerse niet-Nederlandse achtergrond, maar speelde dit geen rol onder vrouwen met een westerse niet-Nederlandse achtergrond.

Hoofdstuk 3 De rol van religie in de besluitvorming over deelname aan prenatale screening op aangeboren afwijkingen: een kwalitatieve studie onder islamitische immigranten van Turkse afkomst

Religieuze overtuigingen en individuele perspectieven op het leven, ongeboren leven, leven met een beperking en zwangerschapsbeëindiging, zijn waarden die deelname aan prenatale screening op aangeboren afwijkingen kunnen beïnvloeden. Een jaar na de invoering van het bevolkingsonderzoek op congenitale afwijkingen in Nederland werden tien diepte-interviews onder zwangere moslima’s van Turkse afkomst gehouden, met als doel de rol te verkennen van religieuze overtuigingen en individuele waarden in het wel of niet deelnemen aan de combinatietest en de SEO. Opvattingen gebaseerd op religieuze overtuigingen over het leven, leven met een beperking en zwangerschapsbeëindiging waren doorslaggevend in de besluitvorming van de geïnterviewde vrouwen over deelname aan prenatale screening. Vrouwen beoordeelden het leven als heilig en ‘door God gegeven’, met inbegrip van het gehandicapte leven, en daarom beschouwden zij een zwangerschapsbeëindiging niet als een optie indien zij zwanger zouden zijn van een kind met aangeboren afwijkingen. Vrouwen noemden anticonceptie als de manier om de geboorte van een gehandicapt kind te voorkomen. Op het moment van de interviews waren de vrouwen zich niet bewust van islamitische jurisprudentie met betrekking tot de toestemming van zwangerschapsbeëindiging in het geval van gediagnostiseerde ernstige afwijkingen. Religieuze overtuigingen speelden bij alle vrouwen een rol in de besluitvorming om al dan niet deel te nemen aan de combinatietest, maar de vrouwen handelden niet allemaal op dezelfde manier. Hoewel geen van de vrouwen een zwangerschapsbeëindiging op het oog had in geval van een gediagnostiseerde ernstige afwijking van het ongeboren kind, participeerden enkele (vier) vrouwen in de combinatietest omdat ze voorbereid wilden zijn op het eventueel krijgen van een kind met het Downsyndroom. Hoewel bijna niemand het doel van de SEO wist, participeerden alle geïnterviewde vrouwen in de SEO.


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Hoofdstuk 4 Een kwalitatieve studie naar de wijze waarop moslima’s van Marokkaanse afkomst omgaan met prenatale screening op aangeboren afwijkingen

Vijf jaar na de invoering van het bevolkingsonderzoek op aangeboren afwijkingen en vier jaar na het eerder genoemde onderzoek onder zwangere vrouwen van Turkse afkomst, werden twaalf diepte-interviews onder zwangere vrouwen van Marokkaanse komaf gehouden, met als doel te begrijpen hoe deze moslima’s omgaan met prenatale screening op aangeboren afwijkingen. Bij twee vrouwen was de combinatietest verricht en bij alle geïnterviewde vrouwen de SEO. Net als in de voorgaande studie onder zwangere vrouwen van Turkse afkomst, waren voor deze geïnterviewde vrouwen de opvattingen over zwangerschapsbeëindiging het meest bepalend in de besluitvorming over deelname aan de combinatietest. Deze opvattingen over zwangerschapsbeëindiging werden gebaseerd op hun individuele religieuze overtuigingen en waren onlosmakelijk verbonden met hun opvattingen over handicaps en de waarde van het leven. Bovendien leek het voorrecht van het moederschap of het moeder worden op te wegen tegen de last van het dragen van een gehandicapt kind. Moederschap was de focus waarmee vrouwen de besluitvorming om al dan niet deel te nemen aan de prenatale screeningstesten op aangeboren afwijkingen benaderden. De vrouwen benaderden de combinatietest geheel anders dan de SEO. Ze leken de combinatietest als een afschrikwekkende test te zien en de SEO als een aantrekkelijk echo-onderzoek. Bijna alle vrouwen begrepen dat de combinatietest een test is die mogelijk het syndroom van Down opspoort en kan resulteren in het aanbieden van een zwangerschapsbeëindiging. Dit resulteerde in een uitgebreid wikken, wegen en aarzelen over deelname aan deze test. En hoewel sommige vrouwen zich bewust waren van islamitische uitspraken dat, in geval van ernstige afwijkingen, zwangerschapsbeëindiging is toegestaan voordat de bezieling heeft plaatsgevonden, leken deze uitspraken geen rol te spelen in de uitgebreide overwegingen om wel of niet aan de combinatietest deel te nemen. In tegenstelling tot de combinatietest zagen de vrouwen de SEO als een kans om hun kind te zien; hun beslissing om aan de SEO deel te nemen was in het geheel niet gericht op de mogelijkheid van een zwangerschapsafbreking na een negatieve uitkomst. Tot slot benadrukten de geïnterviewde vrouwen het grote belang dat zij hechten aan het nemen van hun eigen individuele keuze om wel of niet aan de combinatietest deel te nemen, omdat ze zich verantwoordelijk weten voor hun keuzes.

Hoofdstuk 5 Counseling voor prenatale screening op aangeboren afwijkingen: voorkeuren van zwangere moslima’s van Marokkaanse afkomst

Dezelfde zwangere vrouwen van Marokkaanse komaf als in de hiervoor genoemde studie, werden geïnterviewd om inzicht te verkrijgen in de voorkeuren van moslimvrouwen over de inhoud en aanpak van prenatale counseling voor prenatale screening op aangeboren afwijkingen, en om te bepalen welke wensen deze vrouwen hebben over de kennis van de

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counselor over de islamitische overtuigingen. De geïnterviewde vrouwen van Marokkaanse afkomst gaven de voorkeur aan een counselor die hen nauwkeurig informeert over de procedures van de testen en de afwijkingen die opgespoord kunnen worden, en die morele onderwerpen ter sprake brengt, om zodoende een weloverwogen en bewuste keuze te kunnen maken om wel of niet deel te nemen aan de prenatale testen op aangeboren afwijkingen. De participanten gaven de voorkeur aan een non-directieve benadering en wilden geen advies van de counselor om wel of niet deel te nemen aan de screening. De geïnterviewde vrouwen gaven de voorkeur aan een counselor die het initiatief neemt morele thema’s te bespreken, zoals het leven met een aangeboren afwijking en zwangerschapsbeëindiging in relatie tot hun eigen waarden en overtuigingen, zodat zij in staat gesteld worden hun eigen autonome beslissing te nemen. Daarom gaven de vrouwen de voorkeur aan een counselor die kennis heeft van de islamitische opvattingen over de waarde van het leven, het leven met een handicap en zwangerschapsbeëindiging. Daarnaast gaven de vrouwen de voorkeur aan een counselor die hen respectvol en als individuen behandelt en hen niet benadert vanuit het clichébeeld van de moslima. Omdat sommige vrouwen de inhoud van de counseling als enigszins bedreigend hebben ervaren, gaven zij voorkeur aan een counselor die duidelijk en rustig spreekt en voldoende tijd neemt om de angst te verminderen.

Hoofdstuk 6 Prenatale screening op aangeboren afwijkingen: het verkennen van de perceptie van de counselor bij de begeleiding van cliënten met een religieuze achtergrond

Dit hoofdstuk beschrijft een kwantitatief verkennend onderzoek onder eerstelijns verloskundige counselors in de twintig deelnemende praktijken van de DELIVER-studie met een tweeledig doel. Ten eerste om te bekijken of verloskundigen in hun rol als counselor aandacht besteden aan de religieuze achtergrond van de cliënt tijdens de counseling over prenatale screening op aangeboren afwijkingen, ten tweede om in te schatten welke kennis de counselors hebben omtrent de vraag of zwangerschapsbeëindiging vanuit islamitisch perspectief is toegestaan. Van de 98 participanten vond 75% dat zij aandacht aan de religieuze achtergrond van de cliënt moeten besteden tijdens de counseling en 68% gaf aan daadwerkelijk aandacht te besteden aan de religieuze achtergrond van de cliënt. De drie belangrijkste redenen waarom counselors geen aandacht besteedden aan de religieuze achtergrond van de cliënt, waren de mening dat religie geen relatie heeft met de besluitvorming van de cliënt over deelname aan de prenatale testen op aangeboren afwijkingen, dat het initiatief bij de cliënt ligt om haar religie tijdens de counseling naar voren te brengen en dat het aandacht besteden aan de religieuze achtergrond van de cliënt niet noodzakelijk is vanwege het autonome karakter van de beslissing van de cliënt om al dan niet deel te nemen aan de prenatale testen. De deelnemers hadden weinig kennis over zwangerschapsbeëindiging vanuit islamitisch perspectief. Hoewel counselors met een hoger percentage islamitische cliënten


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in hun praktijk (< 9%) meer algemene kennis hadden over zwangerschapsbeëindiging vanuit islamitische perspectieven dan counselors met een lager percentage islamitische cliënten in de praktijk, was in beide groepen de specifieke kennis over zwangerschapsbeëindiging vanuit islamitische perspectieven gerelateerd aan het syndroom van Down en andere aangeboren afwijkingen beperkt. Tot slot heeft de meerderheid van de counselors (65%) behoefte aan extra onderwijs over religieuze overtuigingen in relatie tot het counselen over prenatale screening op aangeboren afwijkingen.

Hoofdstuk 7 Algemene DiscussieDe algemene discussie van dit proefschrift geeft een kort overzicht van de belangrijkste resultaten en snijdt een aantal overstijgende onderwerpen met betrekking tot de belangrijkste resultaten aan. Het hoofdstuk eindigt met aanbevelingen voor de praktijk en voor verder onderzoek.

Voor zover bekend is onze studie naar de deelname aan de combinatietest en de SEO in Nederland de eerste landelijke studie en ook de eerste studie naar factoren gerelateerd aan deelname aan de SEO. Wij pleiten voor een betrouwbare methode om de actuele deelname aan beide testen in Nederland in beeld te brengen, bij voorkeur een adequaat werkende nationale registratie. De significante verschillen in de overwegingen en besluitvorming van de geïnterviewde moslimvrouwen om deel te nemen aan de combinatietest dan wel de SEO, vertaalt zich niet alleen in een relatief lage deelname aan de combinatietest en een relatief hoge deelname aan de SEO, maar roept ook de vraag op in hoeverre de keuze van de vrouwen voor deelname aan de SEO geïnformeerde en weloverwogen keuze is. Het lijkt erop dat deelname aan de combinatietest gebeurt op een opt-in basis, terwijl deelname aan de SEO geschiedt volgens een opt-out benadering.

De conclusie lijkt gerechtvaardigd dat de waarden en overtuigingen van vrouwen op basis van hun religieuze achtergrond een rol spelen bij de beslissing om al dan niet aan de combinatietest deel te nemen, maar dat deze waarden en overtuigingen geen rol spelen bij een eventuele deelname aan de SEO. Zwangere islamitische vrouwen van Turkse en Marokkaanse afkomst geven de voorkeur aan counselors die het initiatief nemen om de waarden en overtuigingen van zwangere vrouwen over deelname aan prenatale screening op aangeboren afwijkingen ter sprake te brengen, om gemakkelijker een geïnformeerde, reproductieve keuze te kunnen maken. Terwijl veel verloskundigen in hun rol als counselor zeiden dat ze de religie van de cliënt in aanmerking nemen, behoeven counselors meer kennis van religieuze opvattingen die invloed hebben op de besluitvorming rondom deelname aan prenatale screening op aangeboren afwijkingen, evenals de juiste vaardigheden om religieuze kwesties bespreekbaar te maken. Omdat religieuze waarden en overtuigingen van vrouwen van invloed zijn op hun

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beslissingen over deelname aan prenatale screening op aangeboren afwijkingen, en omdat de geïnterviewde vrouwen de voorkeur geven aan counselors die aandacht hebben voor hun waarden en overtuigingen, is religie niet alleen gelegen in de privésfeer, maar ook in het publieke domein, bijvoorbeeld bij counseling over prenatale screening op aangeboren afwijkingen in de gezondheidszorg.

Chapter 9PhD Portfolio Selection

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Courses

Epidemiological Research: structure and interpretation Introduction SPSS Principles of epidemiological analyses of data Qualitative research in health science Regression Techniques Social, economic and medical prescriptions in Islam Interpreting Islam

Presentations

2011 North American Midwifery: Beyond Boundaries (Niagara, Canada) Oral Presentation: Misconceptions about termination within Islamic law

2012 International Forum on Quality & Safety in Healthcare (Paris, France) Poster Presentation: Islam and prenatal screening: practice and theory in the Netherlands

2012 International Society of Prenatal Diagnostic Conference (Miami, USA) Poster presentation: Midwives’ misconception about early termination of pregnancy in Islamic law with regard to prenatal screeningPoster Presentation: Women’s religion affects the uptake for non-invasive prenatal screening tests for congenital anomalies

2012 Midwife-led care (VU, Amsterdam) Oral Presentation: Women’s religion affects the uptake for non-invasive prenatal screening tests for congenital anomalies.

2014 Optimizing Childbirth Across Europe (Brussels, Belgium) Oral presentation: Prenatal congenital anomaly screening among women with a non-Dutch ethnic background

2014 International Confederation of Midwives (ICM) (Prague, Czech Republic) Poster Presentation: Counseling clients with a religious background for prenatal screening tests on congenital anomalies.

Chapter 10List of Publications

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List of Publications

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1. Martin L, Gitsels-van der Wal JT, Pereboom MT, Spelten ER, Hutton EK, van Dulmen S. Midwives’ perceptions of communication during videotaped counseling for prenatal anomaly tests: How do they relate to clients’ perceptions and independent observations? Patient Educ Couns 2015; doi: 10.1016/j.pec.2015.02.002.

2. Gitsels-van der Wal JT, Martin L, Manniën J, Verhoeven P, Hutton EK, Reinders HS. Antenatal counselling for congenital anomaly tests: pregnant Muslim Moroccan women’s preferences. Midwifery 2015;31:50-57.

3. Gitsels-van der Wal JT, Martin L, Manniën J, Verhoeven P, Hutton EK, Reinders HS. A qualitative study on how Muslim women of Moroccan descent approach antenatal anomaly screening. Midwifery 2015;31:43-49.

4. Spelten ER, Martin L, Gitsels JT, Pereboom MT, Hutton EK, van Dulmen S. Introducing video recording in primary care midwifery for research purposes: Procedure, dataset and use. Midwifery 2015;31(1):95-102.

5. Gitsels–van der Wal JT, Verhoeven PS, Manniën J, Martin L, Reinders HS, Spelten E, Hutton EK. Factors affecting the uptake of prenatal screening tests for congenital anomalies; a multicentre prospective cohort study. BMC Pregnancy Childbirth 2014;14(1):264-273.

6. Gitsels–van der Wal JT, Manniën J, Gitsels LA, Reinders HS, Verhoeven PS, Ghaly MM, Klomp T, Hutton EK. Prenatal screening for congenital anomalies: exploring midwives’ perceptions of counseling clients with religious backgrounds. BMC Pregnancy Childbirth 2014;14:237.

7. Martin L, Hutton EK, Gitsels-van der Wal JT, Spelten ER, Kuiper F, Pereboom MT, van Dulmen S. Antenatal counselling for congenital anomaly tests: an exploratory video-observational study about client-midwife communication. Midwifery 2015;31(1):37-46.

8. Martin L, Hutton EK, Spelten ER, Gitsels-van der Wal JT, van Dulmen S. Midwives’ views on appropriate antenatal counselling for congenital anomaly tests:

do they match clients’ preferences? Midwifery 2014;30(6):600-609.9. Gitsels-van der Wal JT, Manniën J, Ghaly MM, Verhoeven PS, Hutton EK, Reinders

HS. The role of religion in decison-making on antenatal screening of congenital anomalies: a qualitative study among Muslim Turkish origin immigrants. Midwifery 2014;30:297-302.

10. Pereboom MT, Manniën J, van Almkerk KD, Spelten ER, Gitsels JT, Martin L, Hutton EK, Schellevis FG. What information do Dutch midwives give clients about toxoplasmosis, listeriosis and cytomegalovirus prevention? An exploratory study of videotaped consultations. Patient Educ Couns 2014;96(1):29-35.

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11. Boerleider A, Manniën J, Gitsels J, Klomp T, Wiegers T, Devillé W. Participatie van Turkse en Marokkaanse vrouwen aan onderzoek. Ervaringen binnen de nationale DELIVER studie. Tijdschrift Sociale Geneeskunde 2012;8(90):517-520.

12. Gitsels J, Manniën J, Gitsels LA, Verhoeven PS, Ghaly M, Klomp T, Reinders H, Hutton E. Midwives’ misconception about early termination of pregnancy in Islamic law with regard to prenatal screening. Prenat Diagn 2012;32(1):1-128.

13. Gitsels J, Spelten E, Manniën J, Reinders H, Hutton E. Women’s Religion affects the Uptake for Non Invasive Prenatal screening Tests for Congenital Anomalies. Prenat Diagn 2012;32(1):1-128.

14. Spelten E, Gitsels J, Pereboom M, Martin L, Hutton E, van Dulmen S. Video recording to improve the quality of prenatal genetic counseling. Prenat Diagn 2012;32(1):1-128.

Chapter 11Curriculum Vitae

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Janneke Gitsels-van der Wal is als oudste van vijf kinderen geboren op 13 juni 1962 te Aduard, een historisch dorpje onder de rook van Groningen.

In 1984 behaalde zij haar diploma voor verloskundige aan de Vroedvrouwenschool te Heerlen en begon zij haar loopbaan als klinisch verloskundige in het Onze Lieve Vrouwengasthuis te Amsterdam. Na de geboorte van haar oudste kind legde ze het werk als praktiserend verloskundige neer en verrichtte zij bestuurswerk. Van 1999 tot 2005 studeerde zij theologie aan de Evangelische Theologische Faculteit te Leuven en Godsdienst Pastoraal werk aan de Christelijke Hogeschool te Ede. Beide opleidingen heeft ze succesvol afgesloten.

In de beginjaren van dit millennium was er een groot tekort aan verloskundigen op de arbeidsmarkt. In 2003 werd haar dringend verzocht terug te keren in de eerstelijns verloskundige zorg; aldus geschiedde. Van 2006 tot 2008 deed zij de master Geestelijke Zorg in Organisaties aan de Faculteit der Godgeleerdheid van de Vrije Universiteit te Amsterdam. Het onderwerp voor de masterthesis was Islam en Prenatale Screening. Die keuze was gemakkelijk gemaakt, daar in 2007 de prenatale screening op aangeboren afwijkingen werd ingevoerd en zij haar verloskundig vak uitoefent in een gebied met een hoog percentage allochtonen met een islamitische achtergrond. In 2008 startte zij samen met een collega Verloskundigenpraktijk Lavita te Zaandam, alwaar zij tot op heden verloskunde praktiseert. In 2008 vond zij ook draagvlak bij de afdeling Verloskunde en de afdeling Geestelijke Zorg van het Zaans Medisch Centrum om herdenkingsbijeenkomsten te organiseren voor ouders van wie het kind rondom de geboorte overleden is; deze bijeenkomsten vinden jaarlijks plaats. Sinds 2009 doceert zij Ethiek op de Verloskunde Academie te Groningen en te Amsterdam.

Aansluitend op de masterthesis is zij in 2010 gestart met promotieonderzoek aan de Faculteit der Godgeleerdheid van de VU, gecombineerd met de jonge afdeling Midwifery Science, onderdeel van het EMGO+-instituut van het VU medisch centrum. Zij is actief op VSV-niveau, lid van een regionaal netwerk geboortezorg en van de landelijke werkgroepen VIL en RIVM Voorlichting en Deskundigheidsbevordering Down-SEO.

Janneke is getrouwd met Hans en samen hebben zij vier dochters: Hannah (1985), Lydia (1987), Paula (1988) en Lisanne (1990). Tijdens het promotietraject kregen Hannah en Ivy twee kinderen, Lloyd (2012) en Rosalie (2014).

Chapter 12Dankwoord (Acknowledgement in Dutch)

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Tot slot wil ik graag een ieder bedanken die op welke wijze dan ook een bijdrage heeft geleverd aan het tot stand brengen van mijn proefschrift. Alhoewel ik weet dat het onmogelijk is iedereen bij naam te noemen, wil ik enkele mensen speciaal vermelden.

De zwangere vrouwen die deelgenomen hebben aan de interviews en de verloskundigenpraktijken die deelgenomen hebben aan de DELIVER-studie wil ik in het bijzonder danken voor hun bijdragen aan dit proefschrift. Zonder jullie had dit onderzoek geen kans van slagen.

Mijn promotoren, Hans Reinders en Eileen Hutton, wil ik hartelijk danken voor het getoonde vertrouwen in het slagen van het onderzoekproject. Hans, als mentor gaf je me alle ruimte en ondersteuning me te ontwikkelen als onderzoeker en inspireerde je me mijn eigen weg hierin te vinden. Je heldere en overstijgende blik op het onderwerp hielp me om hoofdzaken van bijzaken te onderscheiden. Je interesse in de dagelijkse praktijk van het onderwerp heeft me goedgedaan. Eileen, vaak heb je tijd vrijgemaakt een onderdeel van een artikel te bespreken en je hebt me geleerd om concreet zin voor zin, soms woord voor woord, te schrijven. Je leerde me niet te snel tevreden te zijn met een versie, maar het een paar dagen weg te leggen en er dan opnieuw naar te kijken. Mede daardoor werden de artikelen vlot geaccepteerd. Je bent een inspirerende persoonlijkheid, wetenschapper met ervaring van de praktijk. Bijzonder warme herinneringen heb ik aan het verblijf bij jou en je familie in Canada. Dank voor de mogelijkheid om op die manier aan mijn Engelse taalvaardigheid te werken, om kennis te maken met de Canadese opleiding tot verloskundige en met de verloskundige praktijk in Canada; een indrukwekkende tijd met mooie ontmoetingen en gesprekken.

Mijn copromotoren, Judith Manniën en Nel Verhoeven, hebben een grote rol gespeeld in het tot stand brengen van dit proefschrift. Judith, als dagelijks begeleider heb je me vele kneepjes van het onderzoek doen geleerd. Vrijwel alles was nieuw voor me en jij leidde me er stap voor stap doorheen. Per omgaande kreeg ik input en feedback wanneer ik daar om vroeg, altijd stond je klaar om me te helpen: veel dank daarvoor. Dat het leven niet alleen uit onderzoek doen bestaat, onderstreepten we met het uitwisselen van foto’s van de kleintjes. Nel, veel heb ik te danken aan je begeleiding op het gebied van statistiek en methodiek. Wat ben ik blij dat ik je ‘op het spoor’ ben gekomen als docent van dochter Lisanne. Je was altijd bereikbaar voor input en feedback, hebt me bij de hand genomen bij de uitvoering van analyses bij jou op de universiteit in Middelburg en hebt me plezier weten te geven in het doen van analyses. Daarnaast ben je een inspirerende persoonlijkheid die zich niet uit het veld laat slaan. Dank ook voor de vriendschappelijke gesprekken en de warmte die daaruit sprak.

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De overige leden van de promotiecommissie, prof. dr. R.R. Ganzevoort, prof. dr. M.C. Cornel, prof. dr. J.M.M. van Lith, prof. dr. R. de Vries, dr. M. Ajouaou, dr. M.P. Amelink-Verburg en dr. E.R. Spelten, wil ik hartelijk danken voor de bereidwilligheid mijn proefschrift op zijn wetenschappelijke waarde te beoordelen.

De Academie voor Verloskunde Amsterdam en Groningen (AVAG) en de Koninklijke Nederlandse Organisatie voor Verloskundigen (KNOV) in de vorm van de toekenning van de PhD-Scholarschip 2012 ben ik zeer erkentelijk voor hun financiële bijdrage.

Sylvia, samen met mijn man Hans moedigde jij mij na het behalen van de master aan om promotieonderzoek te doen. Dank voor de vele gesprekken bij jou thuis op Haaldersbroek, waar we de knelpunten van de combinatie van onderzoek doen én een bedrijf runnen ontzenuwden. Jouw doorzettingsvermogen ondanks tegenslagen inspireerde me telkens weer om gestaag door te gaan. Mooie herinneringen heb ik aan het samen begeleiden van bevallingen van bekenden en familie, vooral die van de geboorte van mijn oudste kleinkind. Lieve Nasim, maat en vriendin, zonder jouw instemming was het ingaan van een promotietraject een moeizame zaak geworden. Maar je gaf veel meer dan je instemming; je hebt me al die jaren gemotiveerd, gestimuleerd en plezier gegeven in deze hele exercitie met je niet aflatende interesse in de ins en outs van het proces; veel dank. Evelien, hartelijk dank voor je bijdrage aan mijn promotietraject van het begin tot het einde. Je overstijgende én verdiepende vragen scherpten mijn werk aan. Daarnaast verstond je de kunst me te helpen te relativeren en hebben we veel plezier gehad. Een van de hoogtepunten was ons verblijf in Miami met Linda Martin, waar we naast conferentiebezoek werkten aan het designartikel van de video-opnamen.

Graag wil ik de collega’s van de AVAG en de afdeling Midwifery Science (VU), danken voor hun bijdragen aan en interesse in het onderzoek. Gea, dank voor je support. Ank, dank voor het sparren over de onderzoeksvragen. Winnie, dank voor de ontspannen wijze waarop je me telkens weer hielp bij de literatuurzoekopdrachten. Vierdejaars studenten wil ik bedanken voor het meewerken aan verschillende delen van mijn promotieonderzoek tijdens hun onderzoeksemester. Lidewij, dank voor de interesse in mijn onderzoek en de mogelijkheden resultaten te presenteren op de afdeling Community Genetics. In de ontwikkelingen rondom de NIPT zullen we elkaar nog regelmatig tegenkomen.

Met veel genoegen kijk ik terug op de promovendidagen van de DELIVER-studie, waarin we de verschillende stadia van ons onderzoek aan elkaar presenteerden en elkaar input gaven. Trudy, Linda, Monique, Esther, Agatha, Carien, Catja, Myrte, Ruth en Doug, hartelijk dank voor jullie stimulerende en inspirerende bijdragen tijdens de promovendidagen van de DELIVER-


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studie. Het wij-gevoel van deze dagen bracht een positieve balans in de soms eenzame weg van een individueel promotietraject.

Zonder de ondersteuning en aanmoediging van mijn lieve collega’s Katleen, Kris, Nasim, Tania, Femke, Aukje, Sarah, Yasemin, Yvonne, Alice, Natascha en Mirjam was dit proefschrift er ook niet gekomen. Jullie hebben me de gelegenheid geboden promotieonderzoek te doen naast de uitoefening van het verloskundige vak. Jullie toonden telkens weer interesse, vierden elk gepubliceerd artikel mee en moedigden me aan ook de laatste loodjes te dragen. Ik voel me rijk met collega’s als jullie. Ook wil ik de collega’s van de verloskundigenkring en van het Zaans Medisch Centrum Marianne, Neriman en Flip bedanken voor hun belangstelling in het onderzoek en de mogelijkheden om delen van het onderzoek te presenteren.

Familie en vrienden wil ik hartelijk danken voor de getoonde interesse. Petra, dank voor de ontspannen strandwandelingen en etentjes. Fenneke, dank voor je luisterend oor als ik met je over het onderzoek sprak. Jolette, bedankt voor het redigeren van de Nederlandse teksten in het proefschrift. Attie, Monique, Joke, Andrea, Janke en Marja, ruim 30 jaar geleden studeerden we af als verloskundigen en nog steeds zijn onze levens verbonden; dank voor jullie interesse en ondersteuning. Xander, bedankt dat ik me terug kon trekken op je ‘boot’ om in alle rust te schrijven. De vrouwen van het Spant Cooking Club bedank ik voor de ontspannen kookavonden; deze avonden waren een welkome afleiding tussen het begeleiden van bevallingen en het doen van onderzoek in.

Lieve Linda, jouw aandeel aan mijn promotietraject is een heel bijzondere! Je bent me als het ware in de schoot geworpen. Hans Brug adviseerde jou aan het begin van je promotietraject een maatje te zoeken die zich op hetzelfde onderzoeksveld beweegt; dat advies heb je direct ter harte genomen en resulteerde in onze allereerste afspraak in 2010 bij La Place op Sloterdijk. Veel hebben we de afgelopen jaren samen gedaan: onderzoeksvragen van de ander meegenomen in vragenlijsten en interviews, samen met Monique video-opnamen van de counseling over prenatale screening tijdens de intake over zes praktijken in het land uitgerold, wekenlang bij het Nivel opnamen gecodeerd, datasets op orde gebracht, met elkaars artikelen meegeschreven, conferenties bezocht, (duo-)presentaties gegeven, et cetera. De afgelopen tweeënhalf jaar heb je wekelijks bij mij thuis gewerkt; tijdens die dagen maakten we meters en bespraken we de resultaten van onze onderzoeken. Jouw bijdrage voor mijn onderzoek was je kennis op het gebied van communicatie en psychologie. Daarnaast hielp jouw scherpte en duidelijke vragen mij in tijden waarin ik ’s nachts niet sliep in verband met drukke diensten in de praktijk. Bovenal dank ik je voor onze diepgaande gesprekken, de vele wandelingen en je vriendschap.

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Miranda en Lisanne, dank dat jullie op de dag van de verdediging als paranimfen letterlijk en figuurlijk naast me willen staan. Miranda, dank voor je interesse in mijn onderzoek en voor het wegwijs maken in de onderzoekswereld, voor de vriendschap en de vele gezamenlijke etentjes met onze mannen (en dochters, zeven bij elkaar!). Lisanne, dank voor al jouw input en interesse in het onderzoek. Dank ook voor je geduldige uitleg van statistische analyses en wat ben ik er trots op, dat je medeauteur bent van een van de artikelen. Nog even volhouden, Lisanne, en dan sta jij jouw proefschrift te verdedigen. Dán is het helemaal feest!

Hannah, Lydia, Paula, Lisanne en Ivy, jullie zijn vanaf het begin bij dit promotietraject betrokken. Jullie waren mijn motivatie om een onderzoek als dit uit te voeren; jonge mensen in de vruchtbare periode van hun leven zicht bieden op keuzemogelijkheden binnen de prenatale screening op aangeboren afwijkingen. Dank voor jullie ondersteuning, ieder op jullie eigen wijze, tijdens deze periode, jaar in jaar uit. Ik ben me ervan bewust, dat ik jullie niet altijd de aandacht heb kunnen geven die ik had willen geven. Lloyd en Rosalie, kleinkinderen, wát een cadeau tijdens het promotietraject! Af en toe een uurtje spijbelen om jullie te zien: wat voelde dat goed! De gedachte aan jullie allemaal tovert een lach op mijn gezicht en ik weet me schathemelrijk: ik houd van jullie!

Ten slotte wil ik de belangrijkste persoon in mijn leven bedanken. Lieve Hans, zonder jouw ondersteuning, aanmoediging en niet aflatende vertrouwen in mijn kunnen had dit project geen kans van slagen. Jij weet als geen ander hoe ik het promotietraject beleefd heb. Je hebt me met jouw grenzeloos geloof in mijn kundigheid door de dieptepunten heen gesleept en de hoogtepunten, zoals de acceptie van de artikelen, keer op keer met me meegevierd. Dank voor vijfenhalf jaar koken, dank voor de tijd die je aan onze dochters besteedde als ik afwezig was, dank voor ontspannen sauna-, concert- en theaterbezoeken, dank voor het leven met jou, ik hou van je, Gits!

Religious beliefs in decision-making and counselling around prenatal

anomaly screeningViews of pregnant Muslim Turkish

and Moroccan women and midwives

Religious beliefs in decision-making and counselling around prenatal anom

aly screening Janneke G

itsels - van der Wal

Janneke Gitsels - van der Wal

UitnodigingVoor het bijwonen van de openbare

verdediging van het proefschrift

Religious beliefs in decision-making and

counselling around prenatalanomaly screening

Views of pregnant Muslim Turkish and Moroccan

women and midwives

door Janneke Gitsels-van der Wal

[email protected]

maandag 15 juni 2015 om 11.45 uur preciesin de aula van de Vrije Universiteit

De Boelelaan 1105, Amsterdam

na afloop is er een eenvoudige lunch

rond 15.00 uur vindt de (gezamenlijke) receptie plaats, dit is na de openbare

verdediging van Linda Martin om 13.45 uur

Paranimfen

Miranda [email protected]

Lisanne Gitsels [email protected]

(kinderen tot 9 jaar mogen de verdediging niet bijwonen)

Proefschrift Gitsels

Documents

Transcript of Proefschrift Gitsels