What refugee women want from maternity care: a qualitative study

The number of female refugees and asylum seekers around the world continues to increase (Kingsbury and Chatfield, 2019) and Home Office statistics suggest that around 20–25% of all UK asylum applications are for women of childbearing age (15–49 years), as defined by the World Health Organization (WHO, 2018). This number is likely to increase with the establishment of the Afghan resettlement programme with up to 20 000 people promised to be resettled over the next 5 years in the UK alone (Gov.uk, 2022). Pregnant women seeking asylum and refugee women are identified as a vulnerable group. They have a disproportionately increased risk of adverse maternal outcomes, including higher risk of caesarean section, and neonatal outcomes, such as stillbirth (Bollini et al, 2009; Knight et al, 2018a) as a result of poor underlying health and more complex pregnancies (National Institute for Health and Care Excellence (NICE), 2010; McKnight et al, 2019). For refugee and asylum-seeking women, accessing excellent, respectful maternity care is vital to ensure that their specific needs are met and reduce the risk of an adverse pregnancy outcome.

An asylum seeker is a person claiming refugee status in a safe country having fled home. A person becomes a refugee when their application to remain in the country has been accepted (Goodwin-Gill, 2014). This article will use the term ‘refugee’ to describe women who are both asylum seekers and refugees, as was adopted in the ‘what refugee women want’ project. The White Ribbon Alliance (WRA) is an international coalition whose goal is to ensure safer pregnancy and childbirth for women and newborn babies worldwide. The recent ‘what women want’ global advocacy campaign (WRA, 2018) listened to a million women around the world, asking what one thing they wanted most from their reproductive and maternal healthcare. ‘What refugee women want’ formed part of this campaign, asking refugee women, who can be a seldom heard group, what they wanted most from their maternity care in particular.

For refugee women, pregnancy and early motherhood can aggravate poor underlying health, poverty and deprivation (WHO, 2018). They may have fled traumatic situations such as conflict, torture, the disappearance or killing of family and friends or the threat of sexual violence (Kalt et al, 2013). Living in the UK can add to poverty and deprivation and increase stress levels (Ellul et al, 2020). Many women have insufficient food to feed themselves and skip meals, choosing instead to feed their children because of a lack of resources (Higginbottom et al, 2019).

There is a wealth of studies exploring the experiences of pregnant refugee women and their interaction with maternity services (Higginbottom et al, 2019; McKnight et al, 2019; Fair et al, 2020; Frank et al, 2021). Refugee women may face language barriers, making accessing maternity services difficult (McKnight et al, 2019), potentially impacting on their health outcomes (Tornabene, 2017). The publication over a decade ago of the NICE (2010) guideline ‘pregnancy and complex social factors: a model for service provision for pregnant women with complex social factors’ gave recommendations relevant to all professionals providing care for asylum seekers and refugees to enable optimum health outcomes. Despite this, studies continue to demonstrate that some refugee women who are pregnant have poor experiences of maternity care (Asif et al, 2015; Hestlehurst et al, 2018).

Winn et al (2018) argue that maternity care providers are unprepared for the unique needs associated with refugee women, with these needs not being understood or met by midwives and other healthcare practitioners. Poor communication and lack of information about available services for refugee women are highlighted and women report that they encounter hostility and negative judgmental attitudes from staff (Lephard and Haith-Cooper, 2016), which compound feelings of isolation and loneliness (Tobin et al, 2014). These factors can contribute to pregnant refugee women presenting late and not accessing ongoing care, which is linked to a profound negative long-term effect on both the mother and child's physical and mental health (McLeish, 2005; Hatherall et al, 2016).

Despite the research around refugee women's interactions with health services, there is a dearth of research asking women directly about their maternity care needs. Consequently, the aim of this project was to ask refugee women what they want from maternity care, to understand how to tailor services, to ensure they are acceptable to refugee women and therefore improve their maternity care experience, which may in turn reduce their risk of an adverse pregnancy outcome.

Methods

This paper reports on the secondary analysis of existing data obtained from focus groups previously undertaken in the north of England with refugee women, as part of the wider ‘what women want’ campaign. Secondary data analysis involves the use of previously collected data, for some other purpose (Heaton, 2004). One of the major advantages associated with secondary analysis is that it is both an economical and efficient way to conduct research for a novice researcher. However, some argue that secondary data analysis can be limited in that it may not address clearly the aim of the study and there may be a lack the depth of data required by the researcher analysing the data (Johnston, 2017). Nonetheless, it is an effective means of analysing data when there is difficulty accessing a hard-to-reach, small population and is therefore appropriate for this research study (Dowrick et al, 2009).

Data collection

All participants included in the focus groups were purposefully selected through the voluntary sector. All participants were mothers with preschool age children and were asylum seekers or refugees who had given birth in the UK. A total of 10 women participated in two focus groups, which were conducted by voluntary sector workers with whom the women were familiar. Data were captured through handwritten transcripts and personal reflections by a second voluntary sector worker.

The women were asked to ‘tell their story about maternity care’ and then answer the question ‘what would you want from maternity care if you were pregnant again?’. Women who did not speak English were included in the focus groups if an appropriate interpreter could be found through the voluntary sector group. As part of the campaign, all 10 participants agreed to have a photograph taken with their written headline indicating what they wanted from maternity care. This was made available for analysis alongside handwritten transcripts and reflections. For the purpose of this project, once the data from the headline were extracted, the photographs were destroyed.

Data analysis

Data were thematically analysed using the principles of Braun and Clarke's (2006) six-stage approach. This structured approach involved reading and re-reading the transcripts, coding the data and then grouping the codes into themes. Theme names and clear working definitions were developed. To reduce the risk of bias, two members of the research team undertook the process independently and any discrepancies were discussed and themes were agreed (Table 1). Three key themes emerged from the data: ‘feeling safe’, ‘being treated fairly and equally’ and ‘building a future.’

Ethical considerations

Ethical approval to use the secondary data was obtained from the local university ethics panel on 30 May 2019 (reference number: EC25668). Informed verbal consent had been previously obtained from the participants for the research team to use the data collected. All data obtained were anonymised, removing names of participants and allocating numbers. Data were stored on a password protected server at the university and once analysed, all data were destroyed.

Results

All women included in the focus groups had experienced more than one pregnancy. All lived in a city in the north of England. Three of the 10 women came from sub-Saharan Africa, three from Sudan, one from India, one from south Asia and one from Bolivia. Four women were asylum seekers, two were refugees and three women originally came on a spouse visa and subsequently claimed asylum. Six women were provided with an interpreter. No information was available about one participant (Table 2).

Although women were asked ‘what they wanted from maternity care’, it was obvious from the responses that they wanted to include broader issues related to their general experiences of living as a refugee in the UK.

Three key themes emerged from the data, ‘feeling safe’, ‘being treated fairly and equally’ and ‘building a future’. Verbatim quotations from women are presented, identified as W1–10. Comments made by the voluntary sector workers are indicated V1–10, as they correspond to the women the quotes were obtained from.

Feeling safe

The importance of feeling safe during childbirth was discussed by several participants. One woman expressed how having no birth companion made her feel alone, but the actions of a midwife during labour made her feel safe.

‘She says she wanted her own mother to be there to hold her hand, but that was not possible, so during labour she put out her hand and her midwife held it during the birth. This was hugely important to her.’

V2

One woman reported feeling unsafe giving birth because she had not been listened to. She was a victim of female genital mutilation as a child, and said staff ignored her and her husband's requests during labour, which resulted in an adverse pregnancy outcome.

‘Five times I told them to do the cutting … My husband was there, and he also told them. But they didn't listen to us. As a result, I had a third-degree tear, and it took a long time for me to be repaired and stitched after the birth.’

W1

One woman reported feeling alone and unsafe while in labour and the early postnatal period because of language barriers, while another reported that she was unable to understand what was happening to her. Despite both women not being able to communicate, no interpreter was used to support them.

‘She had no translator to explain her choices or tell her what was happening. Without family or friends, she felt extremely alone and suffered damage to her mental health.’

V6

Some women recalled times when they felt unsafe in their everyday lives in their local communities.

‘We came here because we need to feel safe … I thanked God we were here, we were so lucky … But since the attack on the mosque in New Zealand in March 2019 my community no longer feels safe … My family in Sudan are worried about me being here …

This situation has been developing in the last few years … Now we can't walk after 6pm and we are not safe on public transport.’

W3

‘She talks of a social media campaign which awards 200 points for grabbing a woman's hijab, 350 for throwing acid in the face of a girl.’

V9

The same woman felt unsafe because of her traditional dress and hijab when outdoors.

‘The attacks are against girls and women … People shout “go back home” and swear at us. My son is worried when I go out. I tell him it is in God's hands. My Islam is in my heart, not in my hijab.’

W3

Feeling unsafe was also an issue for one woman within her own home. The security company who owned the property gave staff keys to her apartment, where they arrived and gained access unannounced.

‘They have the keys to your door and let themselves in when they want. I was in the shower once and came out to find a man in my flat. On another occasion they left me a letter to complain about my washing which was drying in my flat. They said I could be deported if I didn't improve my housekeeping.’

W6

Another woman felt unsafe because of domestic abuse by her partner. As a result of her asylum status, she had no choice but to stay in an abusive relationship to remain in the UK or face being deported.

‘He wanted to marry me to look after his children. He wanted me to stay in his house for 2 days a week only, to do the ironing and housework. I had to sleep in a car for the other days. He told me that I had to stay with him as my status was dependent on him.’

W5

Being treated fairly and equally

Women discussed how they felt they were not treated fairly in several different contexts, with a lack of equality when compared to UK citizens. This included in the maternity context where women felt they were treated unfairly or unequally to women who spoke English. Interpreters were not always used in maternity care, leading to women lacking the understanding they needed to consent to care or treatment.

‘She had no translator to explain her choices or tell her what happening, a denial of her rights to consent.’

V6

One woman also felt that the asylum process itself was unfair, which had affected both her and her wider family.

‘The process of applying for citizenship has been so cruel that she regrets taking the legal route and thinks it's better to go underground.’

V4

‘The way they treat you, you are not fully a human being and not fully a woman.’

W4

Another women reported that the length of time and high cost involved when applying for asylum was unfair, leading to an exacerbation of the poverty already experienced by women.

‘The high costs mean that people are always having to borrow money, loan sharks are benefitting.’

W6

One woman, who had waited 10 years to claim asylum in the UK and was now a widow and a single parent from India, described feeling judged and being treated unfairly by both the UK authorities and others within her own community, which was impacting on her mental health.

‘I came here legally. But people judge you, they say you had a child in order to stay. It hurts, and it's not true … My culture also judges you … I was shunned by my Indian husband's family because I talked about women's rights. But here in the UK you have no rights … You just feel empty … I have to stand up for myself and do things for myself, society will let you down.’

W4

One woman expressed that she felt that UK law would not protect her if required, as refugee women were not legally protected in the same way as women who were UK citizens.

‘When her husband decided to divorce, he wrote to the UK Home Office. As a result, her status was revoked, she became destitute and faced deportation.’

V5

One woman found that applying for a visa to remain in the country had a significant impact on her mental health.

‘It's too much stress. I can't enjoy my time with my daughter. One time I was crying at home, and she brought me a tissue. She was only two. I can't forget that. But I will stand up for myself.’

W4

She reported that she wanted to have a significant impact on all women's lives.

‘What I want is equal rights for all women, no matter where we are from.’

W4

Building a future

Some women discussed wanting to help other woman in the future in the same position as themselves to understand both the healthcare available during pregnancy and what to expect during childbirth in the UK.

‘I want a community group to share stories and experiences of giving birth and being a woman.’

W9

The women expressed a desire to build a future life in the UK and be able to engage with health services. To do this, they needed to be able to access different resources, including English language classes and further education to develop skills for the future.

‘I want to learn English, to go to university and to change the rules which make me pay for visas over and over.’

W8

However, to support women to do this, access to childcare needed to be addressed.

‘I want to have childcare so I can study and work.’

W10

Key points

• There is an increasing number of refugee women entering the UK and this is set to increase with the Afghan resettlement programme.
• Refugee women have a disproportionate increased risk of poor maternal and perinatal outcomes.
• The present study found that pregnant refugee women feel unsafe during labour because of poor communication with care providers.
• Women want to be treated fairly and equally.
• Midwives, other healthcare professionals and health visitors are in a key position to improve pregnancy outcomes and support refugee women to build a future for themselves in the UK.
• The knowledge gained from this study can be used to inform midwifery education and ongoing training, with the ultimate aim of reducing health inequalities and improving outcomes for these groups of women.

Discussion

The aim of this study was to ask refugee women what they want from maternity care, to inform maternity services, ensure they are acceptable to refugee women and improve their maternity care experience. This may, in turn reduce their risks of an adverse pregnancy outcome.

Despite this aim, this was only a small part of what women wanted to discuss, which reflects findings from other earlier studies (Lephard and Haith-Cooper, 2016). Women reported that they needed to feel safe, both within the maternity system but also more generally in their communities, they needed to be treated fairly and equally in relation to accessing maternity care but also in relation to the asylum system and within their local communities and families. Women also had a desire to build a future in the UK, supporting other women and furthering their education.

Patient safety is a fundamental issue in healthcare and a priority within maternity services (NHS England, 2019). However, feeling unsafe during labour and birth, together with feeling unsafe in the wider community, was reported by several of the women in this study. The definition of safety currently comes from the perspective of the healthcare provider (Vincent and Amalberti, 2016), with minimal research, and none in the UK, exploring safety from migrant women's perspectives (Rönnerhag et al, 2018). Despite significant progress made to ensure safer childbirth for all women, there continues to be preventable cases of maternal mortality and morbidity (NHS England, 2016) and it is well-documented that migrant woman have an increased risk of adverse pregnancy outcomes resulting in a disproportionate number of migrant women reported in the MBBRACE report (Knight et al, 2018a). Exploring safety in maternity care from a migrant woman's perspectives could contribute to the patient safety agenda. If a woman feels unsafe in maternity care, then this may have an impact on her psychological wellbeing and mental health. A woman who feels unsafe is likely to feel stressed, which can influence pregnancy outcomes (Coussons-Read, 2013) and lead to poor mental health and post traumatic stress disorder (Simpson and Catling, 2016). It can also lead to an increased risk of suicide (Lindahl et al, 2005).

In addition, migrant women who feel unsafe while accessing maternity care may avoid future appointments, which could have a negative impact on pregnancy outcomes (Higginbottom et al, 2019).

Healthcare delivery fundamentally depends on effective and efficient communication between care provider and patient (Vermeir et al, 2015). The impact of persistent language barriers leads to poor communication and understanding between migrant women and their caregivers (Small et al, 2014). Poor communication is recognised as a significant barrier to providing high-quality, compassionate, safe and effective maternity care to women (Babaei and Taleghani, 2019), with the use of interpreters being a vital intervention (Winn et al, 2018). Karlström et al (2015) proposes that women feel safe when they are in control of their bodies by understanding what is happening to them. If women are unable to understand the written or verbal information they are given, this may lead to them feeling out of control of their maternity experience and unsafe. Additionally, if women cannot communicate with the midwife, there is an inequality in care provision when compared with English speaking women. Without an interpreter, women cannot advocate for themselves, leading to a violation of their human rights (Human Rights Act, 1998). In addition, there will be missed opportunities for midwives to determine risk factors that could negatively impact women's pregnancies, leading to inequality in physical and mental health of women (Origlia Ikhilor et al, 2019). This may also result in midwives being unable to obtain informed consent prior to providing care to the woman, which is a legal requirement (Redshaw and Heikkilä, 2010; Small et al, 2014).

Several studies have identified that the behaviours of healthcare professionals can influence refugee women's maternity care experiences (Lephard and Haith-Cooper, 2016; Higginbottom et al, 2019) and migrant women (including refugees) value midwives who are kind and empathetic (Frank et al, 2021). The findings in the present study support this, with a woman reporting that the kindness displayed by the midwife providing care made her feel safe while giving birth. Notably, Sandall et al (2016) argue that safety is increased when women are listened to, but this also requires kind, supportive care and human contact. Filby et al (2020) found that women who are migrants value this compassion even when language barriers cannot be overcome.

Feeling safe within the wider community was also of concern to the women in this study, and some women reported poor attitudes and discrimination by the general public. Public attitudes towards refugees and immigration within the UK are influenced by several factors, including government policy, broader economic and social policies and media portrayal of migration (Mulvey, 2010). The ‘hostile environment’ created by the current UK government influences the attitudes of the general public towards migration (Wilcock, 2019). In addition, wearing traditional clothing made women in the present study vulnerable to hate crimes and the target of those who blame Muslims for undertaking terrorist activity (Wike et al, 2016). Dempster and Hargrave (2017) argue that despite little evidence linking refugees to recent terror attacks, the perceived connection between refugees and terrorism is a key factor driving attitudes towards refugees and migrants (Dempster and Hargrave, 2017). Interventions including the ‘city of sanctuary’ movement (Wilcock, 2019) are needed to increase public tolerance of migration, which in turn could increase the sense of safety for refugee women within their local communities.

The results of the present study also highlight that women's fear of deportation had an impact on them feeling safe, reflecting previous literature (Fair et al, 2020). Women were often in a position where they felt they must stay in a violent and abusive relationship to keep their asylum status, otherwise risking destitution and deportation. Women who are fleeing domestic violence but have been denied ‘leave to remain’ have no recourse to public funds and can be denied access to shelter in women's refuges because these are supported by public funds. Under the 2010 Equality Act, women with protected characteristics including maternity, race and religion should be treated fairly and equally, and denying refugee women support with domestic abuse is a clear violation of this act, as well as a breach of human rights (Human Rights Convention, 1951).

Many women in this study reported financial concerns that they wanted to address. Not having enough funds to support themselves and their families can make women vulnerable to both destitution and exploitation (Asif et al, 2015; Ellul et al, 2020). Although financial support and access to services is available to asylum seekers, they are expected to live on £5 a day (Refugee Council, 2020). They are not allowed to work until they are given leave to remain in the UK and women reported excessive time and financial costs, with one woman waiting 10 years for a decision.

Refugee women in the present study wanted to build a future in the UK through developing their social support networks, learning to speak English and undertaking further education. Building social networks has been reported elsewhere as a means of reducing social isolation, improving access to healthcare and quality of life (Filby et al, 2020; Hawkins et al, 2021). Women in this study talked about supporting other pregnant women and ensuring they understood what would happen to them during childbirth. This suggests that refugee women may not receive education and support in pregnancy through NHS antenatal classes. There is evidence of good practice in areas of the UK, for example National Childbirth Trust specialist antenatal classes for refugee and the Haamla team (Leeds Teaching Hospital, 2022). However, maternity services need to ensure that pregnant refugee women understand pregnancy and childbirth and what to expect in the UK.

As in other recent studies (Origlia Ikhilor, 2019), the present study highlighted the implications of language barriers in maternity care, from the perspective of a woman feeling safe. More research is needed around migrant women's perceptions of safety, but persistent language barriers must be included in the national patient safety agenda. Policymakers must consider difficulties in communication from a legal and human rights perspective. It is argued that a woman who cannot understand her care or communicate her needs is having her human rights violated, but there are also legal ramifications of undertaking care without fully informed consent.

The need for compassionate midwives was raised in this study, but there is also a need for midwives to understand the political agenda around migration, how this may influence a refugee woman experiencing domestic abuse and how she may feel living in a hostile environment. Midwives could engage with the ‘city of sanctuary’ movement with the aim of changing the environment from one of hostility to one of welcome (Wilcock, 2019). In particular, midwives could engage with the maternity stream of sanctuary (Haith-Cooper and McCarthy, 2015), looking at how maternity services can further develop for refugee women. In addition, it is important that midwives are aware of the financial support refugee women are entitled to and also have an understanding of local services, such as food banks, that they can signpost pregnant women to if they cannot afford healthy food to maintain their pregnancy.

Limitations

A limitation of this study was that it included a small sample of women from previously undertaken focus groups. The quality of the data collected may have been influenced by the skills of the voluntary sector workers and, as the workers were known to the women, this may have influenced their responses (Polit and Beck, 2020). The women lived in the same area, were self-selecting and may have represented a similar social network. However, women originated from different continents, Africa, Asia and America, and there is little research that asks refugee women directly what they want from maternity care. The data provide an insight into the wider lives of women living as refugees in a city in northern England.

CPD reflective questions

• What additional training and education is available to help you improve the care and support you give during pregnancy and labour to refugee women?
• How much emphasis do you place on using a professional interpreter when providing care for a woman who speaks limited English?
• What do you think are some of the wider social and political issues that are experienced by refugee women?
• What voluntary sector services exist in your area to support pregnant refugee women who want to build a future for themselves in the UK and how could you work with them?

Conclusions

Refugee women have a recognised increased risk of poor perinatal health outcomes. It is important to understand how services can be tailored to meet the needs of all women and the present study identified what refugee woman want from maternity care by asking them directly. The main findings indicated that women felt unsafe in labour because they were unable to communicate with care providers. Midwives are in a key position to improve communication with pregnant refuge women, improve pregnancy outcomes and support women to build a future for themselves in the UK. Midwives need to understand the wider issues around migration and being a refugee and use this knowledge in practice when caring for women to help them feel safe. However, to do this, midwives need training and support to provide the care required to meet the needs of pregnant refugee women.