Course Advanced learning material about the challenges of human reproductive medicine in a changing Europe for OB/GYN residents

2021-1-HU01-KA220-HED-000027613 - COHRICE

SYLLABUS

Pre-pregnancy care and pregnancies related to minority ethnic groups - especially Roma ethnicities, migrants from Africa and Asia

(Advanced level)

A brief overview of the Social background

According to data from the European Parliament, the Roma minority is the largest ethnic minority in Europe. Their population is estimated to be around 10-12 million, with approximately 6 million living in EU countries. However, it is difficult to determine their exact numbers.

Within a narrower geographical region, there are significant social and cultural differences among individual Roma communities. The lack of data on specific Roma communities makes it challenging to form an accurate picture of their socio-economic situation.

Despite their presence for centuries—primarily in Eastern Europe—their integration is incomplete, and significant cultural differences remain between Roma and the majority society.

For nearly 30 years, the EU has been promoting the integration of Roma communities and addressing social exclusion and negative discrimination, particularly in four key areas: education, employment, healthcare, and housing.

In terms of proportion, the largest Roma community lives in Romania. Consequently, this lecture material primarily focuses on the Romanian experience and reflects the majority perspectives of the Romanian and Hungarian universities participating in the project.

The right to procreate has been listed as a fundamental human right by the UN. This implies that every individual should have the right to choose freely how many offspring to have. Society must ensure that every individual can exercise this right and that no one is discriminated against in this respect. Our society is becoming increasingly complex, with more and more ethnic minorities. One of the most prominent of these minorities in our region is the Roma minority, which has been living together with different European societies for centuries and, as a result of migration in recent years, new ethnic groups with different cultural roots are beginning to emerge. On the one hand, migrants migrate in order to improve their employment opportunities (so-called labour migration) and, on the other hand, they migrate because of conflicts, human rights violations or persecution.

While a diverse population offers significant potential for economic development, inequalities in reproductive health care between the majority and minority populations are almost ubiquitous. (1,2) The Roma women reported a variety of poor experiences that constituted mistreatment within maternity care, including poor communication being abandoned physical and verbal abuse being refused care and being made to wait until the non-Roma women had been attended to.(3) Higher maternal and infant mortality rates among women from minority groups are observed in many EU countries.(4)

The European Parliament 2020 report Strongly condemns Romani women ethnic segregation in maternal health care facilities; calls on Member States to immediately prohibit all forms of ethnic segregation in health facilities, including maternal health care settings. (4) In order to eliminate these phenomena and to ensure adequate obstetric care and understanding of the specificities of obstetric care, it is necessary to get to know the specificities of Roma society. Cultural rapprochement facilitates better relations between the patient and the doctor and thus improves the quality of health care.(5)

What are the specificities of Roma society?

Although they have been present in Eastern Europe in particular for centuries, their integration is practically complete, but very significant cultural differences remain between Roma and their host nations. Obviously, these cultures have influenced each other, and therefore cultural differences within Roma communities are large even within a relatively narrow geographical region. The Roma minority is estimated to number around 10 million, 60% of whom live in EU countries.(4)

In many regions, underage marriage is commonplace among wealthy Roma families. They are bound by law, so to speak. Although the law makes sexual intercourse with a minor a criminal offence, it is only if the perpetrator is not a minor.  Prearranged marriage is very common and they are encouraged to have children at a very early age.

What factors affect access to reproductive health services for ethnic minorities and migrants?

Although there are Roma families living in good material conditions, around 80% of the Roma population live below the poverty line in their own country (6)

Linguistic obstacles

The language barrier is a major barrier to accessing care. Women, especially migrants, described not being able to speak the local language and fear of misinterpretation or misunderstanding as a major source of anxiety. The provision of a qualified interpreter is important, but sometimes few patients make use of these professional interpreting services, mainly because they are unaware of the existence of an interpreter or because they believe that there will be a cost. Family members or friends were the main providers of interpreting services, and most found the services of a family member to be sufficient.

Lack of information

There were two different reasons: they did not understand the information they received because of language barriers, or they never received the information. One reason is that 50% of Roma aged between 6 and 24 do not go to school.(7) Health care providers should provide them with basic information. 

Roma women also feel a need to be educated and to receive professional advice, such as appropriate lectures and/or workshops dealing with reproductive health that would ensure them a higher quality of life over time.(8)

In addition to the information provided orally in direct contact with health or social professionals, the provision of written information material in several languages is essential to facilitate access and orientation in the health system. The internet can be a valuable source of information, especially for finding information in the mother tongue.

Financial obstacles

Cost is a major barrier to healthcare for highly vulnerable groups such as minorities and migrants. Even if they have health insurance, they often cite high premium costs.

Shamefacedness and other cultural issues

Shyness is a personal barrier that explains why women do not have access to preventive gynaecological services or do not use antenatal care. There are often cultural reasons for excessive modesty and knowledge of these cultural reasons is essential to break down these barriers. For example, for Roma women, but also for Muslim migrants, the main barrier is often the fact that they are not allowed to be alone outside the household. For this reason, Roma pregnant women are often accompanied by their mother-in-law for the examination, while for Muslim women it is also common to have a female doctor.  Muslim women often fear that they will be discriminated against because of the way they dress.(9)

Factors affecting patient satisfaction - Real or perceived discrimination

Members of minority groups and immigrants sometimes feel that they do not get as much attention as local women. Real discrimination in health care was rarely discussed regarding the doctor-patient relationship, these problems were mainly formulated in connection with the registration process prior to the clinical order. (2,6)

What are the difficulties in providing holistic health care for the reproductive process?

Pre-pregnancy counselling is only available to the wealthy. For the marginalised, this type of care is practically non-existent. The main reason for this is the lack of adequate education, as they often drop out of school. (13) The affluent, citing cultural traditions, are often in a hurry to have children in their teens, are impatient and usually want a result within a year. (11) Pre-pregnancy counselling should make them aware that at this stage of life the body is often underdeveloped, often without regular menstrual cycles and still suffering from irregular menstruation during adolescence.

Pregnancy care

Among people living in good social conditions, if pregnancy is suspected, they immediately seek antenatal care. It is almost a daily requirement that at least one, but usually more than one, family member attends antenatal care on a regular basis. There is often a strong need to know the sex of the newborn as soon as possible. The spread of NIPT-type tests offers an opportunity to do this. In some countries, abortion on request is allowed up to 13 weeks of pregnancy, so it is abused and selective abortion is requested if the foetus is not the gender they want.

Unintended pregnancies are common among Roma families living on the margins of society and among migrants due to a lack of adequate health knowledge. This very often affects minors due to disorganized family relationships and lack of education. (12) In the US, too, only 1.5% of women who have given birth in their teens have a tertiary education by the age of 30. Lack of adequate knowledge often means that they do not detect unwanted pregnancies early enough and are unable to take advantage of the options available to them under the law. When the minor's environment is confronted with an unwanted pregnancy, the response is often exclusion. In such cases, prenatal care is either non-existent or more than incomplete in most cases.  They arrive late to the health system, then too usually only because of pregnancy-related complications. Among the Roma community and migrants, the phenomenon of entering the system late, only after the twentieth week of pregnancy, is almost three times more common. This is due to cultural, linguistic and financial barriers, among others. Because their pregnancies are not followed up, the complications that arise often reach health professionals unprepared.(13) This phenomenon also has a negative impact on the quality of health care because, in the absence of adequate antenatal care and information, births often take place in institutions that are not specialised in the care of obstetric complications.

What maternal diseases are associated with pregnancy?

Teenage pregnant women, especially those in poor social circumstances, are more likely to be affected by anaemia during pregnancy. Preeclampsia and consequent intrauterine foetal retardation are also more common in teenage pregnancies. Lack of antenatal care leads to under-diagnosis of infectious diseases during pregnancy, which can also affect the health of the foetus. Such diseases include toxoplasmosis, cytomegaly, rubella, HIV, hepatitis B, C, lues, Streptococcus B, chlamydia, etc.

Anaemia during pregnancy is common in pregnant women living in poor social conditions. This is usually iron deficiency anaemia which reduces the resistance of the mother's body and can also affect fetal weight gain.

What are the specificities of childbirth in minority ethnic groups?

Overall, as compared to native women, immigrant women showed a clear disadvantage for all the outcomes considered: 43% higher risk of low birth weight, 24% of pre-term delivery, 50% of perinatal mortality.(14) Contrary to the current trend, some women do not insist on a caesarean section as long as everything goes well, and some are even explicitly against it. In the case of wanted pregnancies, those in good social circumstances tend to be disciplined at delivery, while those on the periphery of society (especially in the case of unwanted pregnancies) who have not attended antenatal care at all often lose their temper and behave aggressively. They are completely desperate in a new environment that is alien to them. Those who have never even seen a doctor's surgery are obviously unable to adapt to the hospital order. The key in these situations is to establish a good relationship with the patient, in which a well-trained midwife who is sensitive to cultural differences and a third person from the patient's environment who can be present at the birth can play a major role. When referring to the delivery room, it is very important to take a very detailed obstetric examination and history. This is often the first contact between the doctor and the birth mother. Good communication skills on the part of the doctor are very important in gaining the patient's trust, and this is usually only successful if cultural differences are taken into account.(5)

Why is childbirth education important?

A very detailed obstetric examination and medical history is very important when you go into labour, because you need to be prepared for any surprises. It is often the first contact between the doctor and the mother. Good communication skills are very important to gain the patient's trust. A detailed obstetric examination is important because it is often only then that serious complications are discovered in the absence of antenatal care.

What abnormalities can occur during labour and birth?

The smooth progress of labour requires adequate uterine activity. In very young primiparous mothers, genital hypoplasia is common, resulting in primary pain weakness. In this case, contractions are weak, irregular, infrequent and ineffective from the onset of labour. The underdeveloped body associated with young maternal age and a narrow pelvis, which may be the cause of the spatial disproportion, may result in secondary pain weakness. In such cases, contractions may be of adequate intensity and frequency at the beginning of labour, but may become weaker and more irregular later in labour. Both primary and secondary pain weakness are associated with prolonged labour. The complications of prolonged labour can harm both mother and foetus. Often this unresponsive pain weakness for treatment leads to the indication for a caesarean section.

Disorganized marital status, lower educational attainment, often poor social situation and late initiation of antenatal care all have an impact on pregnancy and childbirth, increasing the incidence of preterm birth and intrauterine growth retardation.

What are the characteristics of the puerperium?

After childbirth, these mothers continue to need extra attention. This includes medical care in the strict sense, but also addressing the patient's social problems. The anaemia that often occurs can be improved with appropriate treatment.

Nowadays, it is rare, but it happens, that a disease that was not detected during pregnancy begins to manifest itself during the postpartum period, for example, a congenital heart malformation.

In pregnant women with preeclampsia, eclampsia can sometimes occur in the first days of the postpartum period, even if it did not occur during pregnancy. (15)

They also require increased social attention. It is the responsibility of the majority society to ensure equal opportunities for these groups, both for the mother and the newborn baby.(16) Because of their social problems, they often leave the hospital without the consent of the doctors, leaving the newborn baby in the hospital. In most cases, this is not because they are not prepared to care for the child, but simply because they do not have the patience to stay in the hospital in cases where the care of the child takes a long time. If the child is premature and has to spend a long time in hospital, the mother often leaves because there is no one at home to look after the other children. When the newborn baby reaches the stage where it can be discharged, with very few exceptions, it is taken home and cared for properly. There are some evidence that interventions to improve cultural competency can improve patient/client health outcomes (5). The majority society has a responsibility to ensure equal opportunities for minorities (Roma, migrants) because this is the best way to help them to integrate and to catch up with the majority society.

Bibliography

1. EU Agency for Fundamental Rights, Roma and Travellers Survey 2019, selected key findings from six EU Member States, including the UK (draft, publication expected in July 2020).
2. Helen L. Watson1 and Soo Downe2. Discrimination against childbearing Romani women in maternity care in Europe: a mixed-methods systematic review Reprod Health. 2017; 14: 1Published online 2017 Jan 5. doi: 10.1186/s12978-016-0263-4 PMCID: PMC5217576PMID: 28057003
3. Janevic T, Sripad P, Bradley E, Dimitrievska V. “There’s no kind of respect here” A qualitative study of racism and access to maternal health care among Romani women in the Balkans. Int J Equity Health. 2011; doi:10.1186/1475-9276-10-53. [PMC free article] [PubMed] [Ref list]
4. European Parliament REPORTon the implementation of National Roma Integration Strategies: combating negative attitudes towards people with Romani background in Europe (2020/2011(INI))
5. Mandy Truong, Yin Paradies, and Naomi Priest Interventions to improve cultural competency in healthcare: a systematic review of reviewsBMC Health Serv Res. 2014; 14: 99. Published online 2014 Mar 3. doi: 10.1186/1472-6963-14-99
6. Second European Union Minorities and  DiscriminationSurvey Roma–Selected findings https://fra.europa.eu/sites/default/files/fra_uploads/fra-2016-eu-minorities-survey-roma-selected-findings_en.pag.29
7. European Comissin Report on the implementation of national Roma integration strategies - 2019                                             https://eur-lex.europa.eu/legal content/EN/TXT/HTML/?uri=CELEX:52019DC0406&from=EN
8. Marjeta Logar, Danica Rotar Pavlič, Alem Maksuti Standpoints of Roma women regarding reproductive health BMC Women's Health volume 15, Article number: 38 (2015) 
9. Firdous T, Darwin Z, Hassan SM. Muslim women’s experiences of maternity services in the UK: Qualitative systematic review and thematic synthesis. BMC Pregnancy Childbirth. 2020;20(1):1-10. doi:10.1186/s12884-020-2811-8
10. European Commission: Report on the evaluation of EU Roma Framework for National Roma Integration Strategies up to 2020.
11. M Nanu, E Stativa, I Nanu, A Kozma, M Otelea, A Nanu, S Scantee, M Ciutan, G Popovici Sexual behavior of Roma women in Romania European Journal of Public Health, Volume 31, Issue Supplement_3, October 2021, ckab165.562, https://doi.org/10.1093/eurpub/ckab165.562Published:20 October 2021
12.  Workshop: Deprived adolescent children access to health Organised by: EUPHA Migrant and ethnic minority health section, EUPHA Child and adolescent public health section, Public Health Program Open Society Foundations, European Journal of Public Health, Volume 30, Issue Supplement_5, September 2020, ckaa165.1164, https://doi.org/10.1093/eurpub/ckaa165.1164 Published:30 September 2020
13. Dharmi Kapadia, Jingwen Zhang, Sarah Salway, James Nazroo, Andrew Booth et. al Ethnic Inequalities in Healthcare: A Rapid Evidence Reviewhttps://www.nhsrho.org/wp-content/uploads/2022/02/RHO-Rapid-Review-Final-Report_v.7.pdf
14. Bollini, P., Pampallona, S., Wanner, P. and Kupelnick, B. (2009), “Pregnancy outcome of migrant women and integration policy: a systematic review of the international literature”, Social Science & Medicine, Vol. 68 No. 3,pp. 452-61reviewsBMC Health Serv Res. 2014; 14: 99. Published online 2014 Mar 3. doi: 10.1186/1472-6963-14-99
15. Silva LM, Coolman M, Steegers EA, et al. Low socioeconomic status is a risk factor for preeclampsia: the generation R study. J Hypertens 2008;26:1200–8.
16. Prati F, Crisp R, Pratto F, Rubini M. Encouraging majority support for immigrant access to health services: Mutiple categorization and social identity complexity as antecedants of health equality. Group Processes Intergroup Relat. 2016; doi:10.1177/1368430216629814.

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