In the current study including 582 pregnancies from NGO clinics in the two largest cities in Norway, we found that about half (46.5%) of the women came in late for their first antenatal visit. We found that NGO clinics mainly serve as entry gates into public care, and by themselves do not intend to provide complete antenatal care. We found high heterogeneity in health seeking behaviour based on women’s origin, and we found a low risk (< 6%) of identified comorbidities and adverse pregnancy conditions. However, the women had a high risk of induced abortions, adverse maternal and perinatal outcomes, and sexually transmitted infections. There was also substantial loss to follow up, even with extensive efforts made to retrieve medical records from the referral hospitals.
Women’s risk profiles
We found a low frequency of comorbidities such as pre-gestational diabetes in both women from the Africa and Middle East and other regions (0.7 and 0.9%, respectively), adverse pregnancy conditions such as gestational diabetes (9.2 and 2.7%, respectively), and few were overweight as they had median normal Body Mass Index (23.5 and 22.3, respectively). Few antenatal visits may result in a low detection of adverse pregnancy conditions, but not necessarily in a low detection of comorbidities, as women used the NGO clinics for non-pregnancy related consultations both before and during pregnancy. Few comorbidities in women may also be due to selection of those able to reach the NGO clinics or to the “healthy migrant effect”, i.e. healthier women were able to migrate or the unhealthy re-migrant effect i.e. healthier women were able to remain undocumented in Norway [43, 44]. A previous study from the two largest cities in Denmark showed a similar age distribution (average age 28.7 years) as in the current study; many were nulliparous (49.4%) and many came from Sub Saharan Africa (27.3%). However, fewer of the women came from Europe in the Danish study (13.8%) . Differences in maternal outcomes for immigrant women in high income countries may be influenced not only by factors in the women’s country of origin, but also by factors in transit countries and the host country [7, 45, 46].
Utilization of health services and care received
In the current study, a total of 46.5% of the women came late for their first antenatal visit (i.e. after the first trimester), fewer than in Denmark (52.6%) and Finland (61%) [34, 35]. Late presentation was particularly the case for women from countries outside the Africa and Middle East regions, who also had short stays in Norway. However, another study of documented migrants recently migrating (≤ 5 years) to Norway found that 16.4% came in late for their first antenatal visit . Earlier studies have identified barriers to accessing health care, for example fear of deportation, financial concerns, being unfamiliar with their entitlements and not knowing where to seek help [12, 17]. In the current study, 91% reported not having been in contact with public primary care before seeking antenatal care at the NGO clinics. Among the 12.0% who became pregnant before coming to Norway, some may have attended antenatal care in their country of origin or during their migration.
The women in the study had fewer visits (1) (IQR 1–3) at the NGO clinics than the WHO recommendation of 8 visits in total. Women not referred to public primary care had similar numbers of antenatal visits as those referred. We have little information about women’s visits after referral to GPs and MCHCs, but only 52.0% of the women that came to the NGO clinics were referred to public antenatal care. Explanations for non-referral might be spontaneous abortions, women leaving Norway, late gestational attendance, or the doctor/midwife not documenting the referral. In the current study, the use of translation services, referral to ultrasound screening, screening for infectious diseases and the completion of recommended measurements were found to be low. The reason may be due to family members or volunteers translating. However, there may also be an uncertainty by the voluntary doctors and midwifes about the level of care that should be provided at the NGO clinics before and after referral to public primary care.
Our findings of the provision of substandard care should be seen in relation to the challenges of providing care to a marginalized group affected by structural vulnerabilities, on the one hand, and the NGO clinics’ limited and voluntary resources, on the other . Studies from other Nordic countries show that women only attending NGO clinics, as well as those being referred to public primary care, had a low number of antenatal visits [34, 35]. A study from Sweden, found that fear, along with practical and psychosocial factors were barriers to accessing health care for undocumented migrants even when being entitled to public primary care . Studies from both Denmark and Sweden have highlighted the importance of a trusting clinical relationship in the antenatal care for undocumented women [15, 49]. In our study women had to relate to a different doctor or midwife at each visit. Undocumented women in previous studies have reported feeling safe and welcome at the NGO clinics; however, they reported experiencing both positive and negative clinical encounters with public services [15, 49].
The proportion of women screened for HIV, hepatitis B and syphilis at the NGO clinics were similar to studies from Denmark (43–60%) and Finland (57–59%). The proportions of positive results in the Danish study were also similar to our study (HIV:1.5% vs. 0.4%),(hepB:6.5% vs. 6.0%),(syphilis:0% vs.1.4%) [14, 34]. An earlier study from Norway found most positive results in undocumented migrants originating from countries with high occurrence of infectious diseases . Screening pregnant women for HIV, hepatitis B and syphilis is an effective method to detect infections and should be available to everyone as simple and cost-effective interventions are available to improve women’s health and prevent mother-to-child transmission.
Maternal and perinatal outcomes
We found a 45.9% risk of any adverse outcome in pregnancy, but no difference by region of origin, despite women from the Africa and the Middle East regions attending antenatal care 8 weeks earlier than women from other regions. Adverse perinatal outcomes were frequent, with 1.0% risk of stillbirth, and 10.3% risk of preterm birth, higher than found in undocumented women in a Swedish register-based cohort study . The prevalence of stillbirth in immigrants to Norway has been shown to be slightly higher than in non-immigrants (0.56% vs. 0.49%) . An earlier population-based study in Norway found preterm birth rates of 6.8% in immigrants and 5.2% in non-immigrants . No difference in risk of preterm birth was found by region of origin despite differences in underlying risk factors. Multiple mechanisms might initiate preterm birth [52, 53]. Studies from other populations suggest that societal factors are more important in explaining differences in preterm birth rates than genetic mechanisms [36, 54]. We found a high (19.3%) proportion of emergency caesarean section. Earlier Norwegian studies have found a 14.8% emergency caesarean rate in immigrants compared to 11.5% in non-immigrants. Disparity did not decrease with length of residence in Norway . The current study revealed no difference in emergency caesarean rate by region of origin despite women from the Africa and Middle East regions staying a median of 1.5 years longer in Norway than other regions.
In the current study we found that 28.4% were referred for induced abortion and 6.0% had a spontaneous abortion. Compared to our results, pregnant undocumented women using NGO clinics in Denmark had a lower proportion of induced abortions (23 and 25.6%) and spontaneous abortion (5%) [14, 35]. An earlier study from Norway found that immigrant women had the same rate (13.6%) of induced abortions as Norwegian women in Oslo . We found that 8.1% of the induced abortions were performed after week 12, a higher proportion than reported in a Danish study (3.5%) . The high frequency of induced abortions indicates a need for improved access to contraceptives and potentially for family planning services.
Women from EEA and women between 18 and 25 years had the highest proportions lost to follow up. As there were fewer lost to follow up concerning abortions (26.0%) than births (46.6%), the length of time being pregnant might also have influenced whether the women were retrieved in hospital records or not. Some women (10.7%) reported that they planned to deliver in another hospital within Norway or in another country. Others might have been deported or left Norway by their own free will.
Underlying reasons for underutilization and adverse outcomes
Our findings suggest that pregnant undocumented women underutilize and receive substandard antenatal care in Norway, despite both having the right to public antenatal care and the possibility to use NGO clinics. However, we do not have the total overview of women’s use of different primary care structures. The trend in use of NGO clinics does not seem to be directly influenced by the policy changes in Norway that gave undocumented women formal rights to antenatal care in June 2011. The use of NGO clinics increased steadily from their start in 2009 to the year 2016, coinciding with the peak of undocumented migrants in Europe in 2016 . Pregnant undocumented migrants have a higher risk of adverse outcomes compared to what is found among immigrants and Norwegian born women, when comparing to previous studies [51, 52, 54,55,56]. Underutilization of antenatal care could explain some of the risk of adverse maternal and perinatal outcomes, but not necessarily all. We found differences in maternal conditions, parity, time stayed in Norway when seeking care, and gestational age at first antenatal visit by regions of origin that were not associated with the outcomes.
Women’s previous experiences from, and familiarity with, other health care system, socio-cultural values and practices, as well as health literacy more broadly influence the use of antenatal care [45, 58]. However, structural vulnerabilities, such as restricted access, low or no income, degrees of dependency on others, and psychosocial hardship, might have a stronger influence on their ability to access adequate antenatal care. Some of these vulnerabilities produced by individual, structural, and institutional barriers have been seen in immigrant women in Norway as well, but based on studies from elsewhere there are reasons to believe that these vulnerabilities are more deep-rooted for undocumented women [7, 10, 11, 59]. A systematic literature review found that immigrant mothers in the Nordic countries with a comprehensive integration policy had better maternal outcomes than immigrant mothers in countries with a weak integration policy . However, pregnant undocumented migrants are not included in the integration policies and initiatives in Nordic countries which are ranked low when it comes to policy towards undocumented migrants . The Nordic welfare states have also been described as being “soft on the inside” (for citizens), but “hard on the outside” (for undocumented migrants) .
It has been argued for operationalizing structural vulnerability in clinical practice and that clinicians, health systems and policy makers should counteract presumptions of deservingness in order to improve the situation for undocumented migrants [62, 63]. Initiatives elsewhere in including pregnant undocumented women in health insurance schemes, and increasing access have increased health coverage and prenatal visits, and reduced infant mortality [6, 64]. The COVID 19 pandemic has shown us the need to address structural conditions to achieve health for all . Empowering marginalized groups through community mobilisation is essential for equitable and resilient health systems. This could open up a collective approach targeting the structural vulnerabilities pregnant undocumented women are facing in Nordic countries, to improve their rights and the accessibility to adequate antenatal care.
Strengths and limitations
The strength of this study is the high number of included pregnancies (relative to previous studies in this field), and the long study period of 11 years. Cohort studies done in a pregnant undocumented migrant population are rare. With extensive efforts, we managed to retrieve hospital records from 60.1% of the women. Some women had up to 20 different hospital records with different ad hoc numbers, and it was challenging to identify and locate the information. Due to the irregular situation of the population, we chose to analyse loss to follow-up as an outcome, both to be transparent and to highlight difficulties of doing research on this population. Because of loss to follow up and missing information we have to interpret the results on maternal outcomes with caution. However, the current study describes a population that has rarely been explored. Women seeking care at the NGO clinics may be a selective group, as pregnant undocumented women may receive antenatal care elsewhere. Some of the women had additional pregnancies during the study period that were not included, as they did not seek help for these pregnancies at the NGO clinics. The quality of the information gathered must be viewed in context of what is recorded with the purpose to provide care. There may also be a problem of misclassification as part of the information is recorded based on self-report from the patients and collected by six different health care workers.