Plain english summary
Introduction
Background
Any distinction, exclusion, restriction or preference or other differential treatment that is directly or indirectly based on the prohibited grounds of discrimination and which has the intention or effect of nullifying or impairing the recognition, enjoyment or exercise, on an equal footing, of Covenant rights ([8], p. 3).
Race and colour | |
Sex | |
Language | |
Religion | |
Political or other opinion | |
National or social origin | |
Property | |
Birth | |
Disability | |
Age | |
Nationality | |
Martial and family status | |
Sexual orientation and gender identity | |
Health status | |
Place of residence | |
Economic and social situation [8] |
Discrimination in maternity care
The Roma
The term “Roma” refers to heterogeneous groups, the members of which live in various countries under different social, economic, cultural and other conditions. The term Roma thus does not denote a specific group but rather refers to the multifaceted Roma universe, which is comprised of groups and subgroups that overlap but are united by common historical roots, linguistic communalities and a shared experience of discrimination in relation to majority groups. “Roma” is therefore a multidimensional term that corresponds to the multiple and fluid nature of Roma identity. ([27], p. 3)
The review
Design
Definition of terms
-
Romani women - women identified or self-identifying as Romani
-
Maternity care - maternal and infant health goods, services and facilities provided during pregnancy, birth, the postnatal period, and through to the early weeks of life
-
Europe – countries belonging to the Council of Europe (Table 2)Table 2Countries belonging to the Council of EuropeAlbaniaAndorraArmeniaAustriaAzerbaijanBelgiumBosnia and Herzegovina Bulgaria,Croatia, Cyprus, Czech Republic,DenmarkEstoniaFinlandFranceGeorgiaGermanyGreeceHungaryIcelandIrelandItalyLatviaLiechtensteinLithuaniaLuxemborgMaltaMoldovaMonacoMontenegroNetherlandNorwayPolandPortugalRomaniaRussian FederationSan MarinoSerbiaSlovak RepublicSloveniaSpainSwedenSwitzerland“The former Yusgoslav Republic of Macedonia”TurkeyUkraineUnited Kingdom
-
Discrimination in maternity care:
Any differential treatment that is directly or indirectly based on the prohibited grounds of discrimination and which has the intention or effect of nullifying or impairing the exercise, on an equal footing, of childbearing women’s right to maternal and infant health facilities, goods and services that are accessible, acceptable, available and of good quality. This includes when the design or provision of maternity care appears neutral at face value, but has a disproportionately negative impact on women and their infants on the basis of prohibited grounds.
Inclusion and exclusion criteria
Population | Romani women or their infants living in countries that are members of the Council of Europe |
Maternity healthcare staff working with Romani women in countries that are members of the Council of Europe | |
Intervention (Question 2 only) | Aims to address discrimination in maternity care |
Occurs during pregnancy or the postnatal period up to 42 days after birth | |
Addresses the design or provision of maternal and newborn care | |
Not interventions with the newborn in the absence of involving the mother | |
Not interventions limited to reproductive technologies or termination services | |
Control (Question 2 only) | Study includes a control group who did not receive the intervention or program |
Outcomes | The accessibility or availability or acceptability or quality of maternal or infant health goods, facilities or services |
Data from health care workers about their experience of caring for childbearing Romani women or their attitudes/beliefs about childbearing Romani women and their infants | |
Study Type | Any peer reviewed quantitative, quantitative or mixed-methods primary research studies or systematic reviews of these studies. |
Only studies with full text | |
Grey literature | |
Language | Available in English |
Date | No date limits |
Search strategy
Data extraction and quality appraisal
Qualitative papers | |
Graded against the criteria of internal validity, reliability, replicability and generalisability [51]. | |
A | No, or few flaws. The study’s internal validity, reliability, replicability and generalisability are high. |
B | Some flaws, unlikely to affect the internal validity, reliability, replicability and generalisability of the study. |
C | Some flaws that may affect internal validity, reliability, replicability and generalisability of the study. |
D | Significant flaws that are very likely to affect the internal validity, reliability, replicability and generalisability of the study. |
Quantitative papers | |
Graded against criteria identified by Lincoln and Guba [52]; credibility, transferability, dependability and confirmability. | |
A | No, or few flaws. The study’s credibility, transferability, dependability and/or confirmability are high. |
B | Some flaws, unlikely to affect the credibility, transferability, dependability and/or confirmability of the study. |
C | Some flaws that may affect the credibility, transferability, dependability and/or confirmability of the study. |
D | Significant flaws that are very likely to affect the credibility, transferability, dependability and/or confirmability of the study. |
Data synthesis
Results
Search outcome
Author and countries | Focus | Design and methods | Sampling strategy | Sample characteristics | Analytic strategy | Quality score | Funding |
---|---|---|---|---|---|---|---|
Janevic et al., [58] Serbia and Macedonia | Discrimination and access to prenatal and maternity care amongst Romani women | Community-based participatory research. 8 focus groups In-depth structured interviews | Purposive sampling of Romani women. Snowball sampling of gynaecologists | 71 Romani women who had given birth in past year, age 14–44. 8 Gynaecologists | Constant comparison method | B | Not specified |
Columbini et al. [59] Albania, Bulgaria, Macedonia | To explore access of Roma in South-Eastern Europe to sexual and reproductive health services | Focus group discussions | Purposive sampling | 58 male and female Romani participants | Thematic analysis using AtlasTi | B- | UNFPA, and European Observatory on Health Systems and Policies |
Condon and Salmon [60] South-west England | To explore mothers and grandmothers’ views on feeding in the first year of life, including the support provided by health professionals. | 1-1 interviews | Not specified | 22 women, of whom 11 were Romani. 2 were grandmothers and 9 mothers. | Coding using NVivo 9 and development of themes | B- | University of the West of England as part of the SPUR Early Career Researcher funding stream. |
Author | Aim | Source type | Setting | Study method | Participants | Funding |
---|---|---|---|---|---|---|
Pohjolainen [36] | To outline barriers and issues experienced by Romani women in relation to maternal health, and issues raised by practitioners in relation to the provision of inclusive maternal health services for Roma. | Parvee Point Report | Ireland | Findings from the Roma maternal and child health seminar, including speakers, focus group discussions among seminar participants, and interviews with practitioners and members of Roma communities. | Romani women Health professionals Roma Health Seminar participants | Health Service Executive, Ireland. |
European Roma Rights Centre [61] | To document discriminatory practices and other forms of human rights abuse against Roma in the provision of health care as well as exclusion from access to health care. | Report for European Roma Rights Centre | Bosnia and Herzegovina, Czech Republic, Croatia, Greece, France, Italy, Kosovo, Romania, Serbia, Slovakia, Slovenia, Bulgaria, Hungary and Spain. | Interviews in Bulgaria Hungary and Spain, research with partner organisations and information from ERRC legal databases | Romani men and women aged 18–70 Physicians treating Roma patients. Number not specified. | Open Society Institute |
Iszak [62] | To document practices of discrimination against Romani women within the health care sector in Hungary. | Report published by European Roma Rights Centre | Szabolcs-Szatmár Bereg, Hajdú-Bihar and Borsod-Abaúj-Zemplén counties in Hungary | Interviews | 131 Romani women Physicians, number not specified. | Not specified |
Centre for Reproductive Rights [63] | To document suspected cases of coerced sterilizations against Romani women who accessed reproductive health services in Slovakia. | Report by Center for Reproductive Rights and Poradna | 40 Romani settlements in Eastern Slovakia | Individual interviews and group interviews | 230 Romani women 25 doctors, 7 hospital administrators, 6 nurses | Not specified |
European Monitoring Centre on Racism and Xenophobia [64] | To investigate the situation of Romani women accessing healthcare. | Report to Council of Europe | Bulgaria, Finland, France, UK. Greece, Hungary, Ireland, Lithuania, Moldova, The Netherlands, Poland, Romania, Serbia and Montenegro, Slovakia and Spain. | Country visits and individual interviews and questionnaires. | Romani women, representatives of governments and NGOs and health workers. Numbers not specified. | UK Government and European Union’s European Monitoring Centre on Racism and Xenophobia |
Zoon [65] | To document the ways in which the Romanian, Bulgarian, and Macedonian governments and their representatives discriminate against the Roma in the provision of social protection benefits, health care, and housing. | Open Society Foundation report | Romania, Bulgaria and Macedonia | Interviews | Government officials, legislators, social workers, Romani activists, health workers and Romani residents. Numbers not specified. | Open Society Institute |
Benjenariu, & Mitrut [66] | To analyse a large-scale public health program targeting Roma minority, the Roma Health Mediation programme, and its impact on prenatal care and child health | Section of PhD thesis published by University of Gothenburg | Romania | Quantitative analysis of the 2000–2008 Vital Statistics Natality (VSN), Vital Statistics Mortality (VSM) files, and data from the Roma Health Mediator registry and the Roma Inclusion Barometer 2006. | Romani women and their infants born between 2000–2008 (10,885 – 13,685 observations) | Not specified |
Qualitative findings
Second order themes | First order themes |
---|---|
Mistreatment within maternity care | Poor communication |
Being abandoned | |
Physical and verbal abuse | |
Refused care | |
Made to wait until other non-Roma patients seen to | |
Negative attitudes of doctors | |
Barriers to accessing maternity care | Lack of perceived need for care |
Lack of awareness of right to care | |
Geographical barriers and transport barriers | |
Denial of treatment | |
Language barriers | |
Financial barriers | |
Patriarchal culture | |
Making things better | Connection with the health centre improving experience |
Knowledge of rights to overcome barriers | |
Presence of Romani health workers improving quality of care |
Themes | Evidence (Study Code) | CERQual score and comments | ||||
---|---|---|---|---|---|---|
Methodological limitations | Relevance | Adequacy of data | Cohrerence | Overall score | ||
Mistreatment within maternity care | 58, 59, 60 | Medium | Medium | Low | High | Medium |
Studies with quality scores of B to B- | Studies represented limited number of geographical contexts across Europe | Small number of primary studies (3), although thick data available. | Well grounded in the data | |||
Barriers to accessing maternity care | 58, 59, 60 | Medium | Medium | Low | High | Medium |
Studies with quality scores of B to B- | Studies represented limited number of geographical contexts across Europe | Small number of primary studies (3) although thick data available. | Well grounded in the data | |||
Making things better | 58, 59 | Medium | Medium | Very low | Low | Low |
Studies with quality scores of B to B- | Studies represented limited number of geographical contexts across Europe | Only 2 primary studies and very thin data from small number of participants | No convincing explanation for contrasting data |
Mistreatment within maternity care
“They are not interested and always tell us that everything is fine, even when it isn’t, and all that just because we are Roma.” ([59], p.530)
“After the delivery… they placed me in a separate room alone and nobody came to ask me how I feel, the entire night I bleed till 7 am. I could die.” ([58], p.4)
“My doctor…she only yells and shouts. They say that she hates Roma” ([58], p.4)“When I gave birth to my sixth child, the midwife told me: ‘Gypsy job! Only Gypsies have so many children!’ It was offensive, I was not happy with this. ([59], p.530)
“There are cases in which doctors do not want to examine us. Maybe because we are ‘black’,‘dark’” ([59], p.530)
“No matter if we are first in line, we are always checked-up last. The Macedonians and Albanians, they always have priority…all that just because we are Roma.” ([59], p.530)
Barriers to accessing care
“I didn’t go to the gynecologist during my pregnancy. Why should I go to the doctor? I knew that I was pregnant. I went to the doctor when I felt my contractions.” ([58], p.7)
“It would be much easier, if we have a doctor here, so that we wouldn’t have to roam the road.” ([59], p.530)
“But if you call an ambulance here you might die” ([58], p.6)
“We received leaflets in English, about how to breast feed and what to expect when you’re a Mum, but we don’t actually know how to read in English.” ([60], p.789)
“They asked me to pay 11,000 MKD [equivalent to USD 252]; I didn’t have that kind of money, but they weren’t interested, so I had to give birth to my child at home. The childbirth lasted for two days and I fell unconscious several times.” ([59], p.528)“They looked for money from me, they didn’t want to deliver my baby until my mother-in-law gave them money and then everything was different.” ([58], p.7)“Next to me was an Albanian woman giving birth, she called the nurse over and gave her a gold bracelet, then the nurse and doctor were the whole time next to her, but they hardly looked at me.” ([58], p.7)
Making things better
“But then he saw that my mother is a health worker, his behavior changed and he apologized.” ([58], p.6)
“I started to go for regular check-ups with a [gynaecologist] who at first sought money from me, but, after telling him that I know that if a woman is pregnant, she shouldn’t pay for the checkups and that I could sue, I didn’t pay for anything […] I didn’t pay the 200 Macedonian denar [equivalent to 4 US dollars] because I knew I don’t have to…” ([59], p.529)
Line of argument synthesis
Findings from the grey literature
Testing the line of argument: women’s views and experiences
“Doctors speak to you like you would speak to a dog.” ([62], p.9)“When I was in the delivery room…The doctor started to call me names (Gypsies) and hit me really hard on my face. The nurse who was attending me hit me on my legs. It hurt, it gave me bruises.” ([63], p.83)
“They took me to the operation theatre the next day…Before I was released, they gave me something to sign, but I did not know what it was and they did not explain it to me. Later I was given a medical release report where it was written that I was sterilized.” ([63], p.64)
“Gypsy room…It is like in a concentration camp there.” ([63], p.75)
“If you have money – you will have a baby, if you don’t have money – you won’t have a baby.” ([62], p.10)
Attitudes of health professionals caring for Romani women
“They start having babies at the age of 12. It is worthless to instruct them. They all know about contraceptives but they have babies on purpose. They know that they will have family allowance if they have children.” ([61], p.64)“Gypsies make their living on irregular work, robbery and the usage of the elders’ pensions. Only 10% of them have a decent job. They expect a lot but do very little.” ([61], p.65)“Roma are poor…parents encourage children to steal, and they teach them to hate white people.” ([63], p.88)
“Romani women…have intercourse all the time, even while pregnant…have several partners, are promiscuous, travel a lot, and bring diseases with them from other countries.” ([63], p.54)“Mothers frequently leave the hospital without their babies…because they have to go home to be available for their husbands…for sex.” ([63], p.88)
“Roma are dull-witted. There is no point to explain to them anything because they will not understand anyway, and it is intellectually exhausting to deal with Romani patients.” ([61], p.65)“Romani women give birth quite easily. More intelligent women give birth with more difficulty, it is something in the brain.” ([63], p.87)“They neglect their health and health problems.” ([63], p.74)
“Roma leave [the hospital] early because of insufficient maternal instincts. Even an animal doesn’t leave its baby.” ([63], p.88)
“I’m very careful so Roma won’t feel discriminated against, but Romani women want to be separated.” ([63], p.78)They [Roma women] all want to be together in one room, even if they had to share one bed in the Gypsy room.” ([63], p.78)“White women do not want to be with primitive, uneducated Romani women.” ([63], p.78)
“Most Romani women are abusing ambulances by saying they don’t have a car when they do…They lie to bring the ambulance because then they are treated immediately in the hospital.” ([63], p.81)