Thematic Analysis of participants’ interview data identified four themes pertinent to the research questions: continuity of care and relationships with healthcare providers are crucial; culturally responsive care is very important; women want to be recognised as equal decision-makers in their perinatal care, and; negative perinatal healthcare experiences have long-lasting psychological implications.
Continuity of care and relationships with healthcare providers
A key element of perinatal service provision identified by both groups of participants as important for wellbeing was the relationships refugee women had with their midwives and other health practitioners. However, few women received care from the same midwife through their pregnancy, and thus developing trusting ongoing relationships was difficult. One exception was Aminata, a first- time mother from Sierra Leone, who was interviewed in her third trimester and then again when her baby was 13 weeks old. Aminata provided an account of the trust that was developed over time with her midwife who undertook home visits pre- and post-birth. During pregnancy, she said:
…so she listens, and when I was I think seven months, and then we started talking if I wanted to have a water birth or if I want to have anything given to me during labour, and she keeps asking me that over and over, just in case over the time I've changed my mind. So she's pretty good with that, yeah. I trust her.
Additionally, Aminata described her midwife building trust after the birth by behaving in culturally responsive ways, such as stepping back and allowing Aminata’s mother to assist with helping the baby to breastfeed, and not interfering with her cultural need to hold the baby for first three hours after birth. After she had birthed her baby, Aminata went on to say:
She's very good communicating with her patients and she understands that every person, every pregnant person is different. So, she tries to meet your needs in the way that you feel comfortable… So I think for her, she treats everybody the way they're meant to be treated, because she doesn’t treat everybody the same. She kind of - she understands what people's individual needs are […] she's done it all. She's worked with a lot of African women and she understands that they have their own beliefs and way of doing things.
On the other hand, Gloria (DRC, gave birth in Australia four months prior), recalled her experience of seeing different practitioners at almost every visit while pregnant, and indicated that “increasing the visits of midwife” after her baby was born, particularly from the same midwife would have been ideal. Indeed, more visits from a trusted midwife after pregnancy was particularly important for women who were socially isolated. For example, Zala (from Ethiopia), who had a caesarean section and was in Australia on her own without her husband, noted:
The [care I received in] hospital is okay but when I come home it was very hard. Then they give me to take some - like some medicine. So, they give me two…The other one is very strong, the other one is okay. But they tell me if you very pain, you can take the strong one, but they say you have to make sure someone is with you […] sometimes they come my friends. Yeah but not every time so one day I was very pain and then when the baby sleep I take the tablet. Then, it just made me sleep. I can't get up. The baby is crying. I can't get up. Then next time I didn’t want to do it. I was scared that time. It's too difficult if no one to look after you. It's too difficult.
Continuity of care - both during and after pregnancy – was also consistently identified by service provider participants as an element of health care needed by refugee women from Africa to support wellbeing. They noted that a lack of continuity of care precluded a trusting relationship, without which women may find it difficult to disclose information pertinent to their care, such as a history of rape, trauma, or FGM. For example, Naomi, a refugee healthcare specialist, said:
Each time you have to restart again. And you have to tell the same story, you have to... and yeah that kind of creates a kind of, yeah you don’t want to tell everything, because you need to, to get the relationship with your professional, and they don’t get it because you don’t see the same person each time. Each time you go there it’s someone different.
Complementing continuity of care, both service providers and refugee women spoke about the use of bicultural social workers positively, as an option that gave women more of a voice, and therefore more control over the health care they received. For example, a bicultural social worker provided reassurance and an additional layer of care in the case of Esi, a 19-year-old woman from Ghana who had given birth in Australia 18 months earlier. Esi was assigned an African bi-cultural social worker during her second trimester which helped her manage her fears in relation to the high blood pressure and mental health issues she was experiencing during her pregnancy:
Because on the first trimester one of the nurses had asked me if I went through depression and stuff, which I told them. So they provided me a social worker […] Yeah it was really great [….] She would come and visit me a lot, she would attend to my appointments […] It was really good because it had made me forgotten about a few things that I’d been worrying about.
Overall, positive relationships with healthcare providers were discussed by refugee women from Africa as a key component of wellbeing, by providing social support to women who may otherwise be isolated, and by building trust and rapport. Correspondingly, continuity of care – including with bi-cultural workers - was seen by service providers as a key mechanism for ensuring positive wellbeing outcomes for African refugee women.
Culturally and refugee responsive care
Refugee women participants reported a variety of culturally insensitive perinatal healthcare practices, particularly in relation to privacy regarding disclosure or care for women previously subjected to FGM. Konnima from Sierra Leone and mother to an 18-year-old and 14-month-old recalled:
She [a midwife] asked me some question. She did ask me about my, how some women have a women circumcision in Africa. If I'm part of it, and ‘how did I feel?’. I think those question was personal, and I told her that, “I don't feel comfortable of you asking me to answer those questions” … The other question that she asked me, she knows that African, they have all these domestic violence things. “Have I gone through anything that will cause damage to my having the baby?” I told her that, “I don't need to talk to you about those things. I think I'm here for my health” … There, she just says that, “look, it's part of the government need to know about you”, but Australia is a multicultural country. Everybody have their own culture. Whatever have happening with me, my own culture issue … It's my privacy.
Here, Konnima details how she saw personal questions about issues such as circumcision and domestic violence as outside the remit of midwives’ work, and as private. Understandings of what is appropriate to ask about, and how to ask about issues such as domestic violence in a way that is sensitive to cultural norms and values of pregnant women, is therefore a critical component of culturally safe care.
Service provider participants also noted that refugee-centred care was critical, including due to the likelihood that refugee women from Africa had undergone FGM. In particular, participants indicated that medical staff needed to be more sensitive and aware when discussing obstetric and gynaecological issues, especially in the context of FGM. Wendy (a refugee health specialist) discussed midwives being unprepared to encounter women who had undergone FGM, and the negative psychological implications for a woman when this occurs.
Particularly for African women not lumping everybody all together but making sure that there’s very sensitive history taking around FGM and proper kind of birth planning and support if that’s really different because my experience or what I know is that most midwives kind of run a mile rather than talk to women sensitively about history of FGM. And there’s been some incidences where you know it hasn’t really been approached very sensitively and there’s been no proper birth planning and history taking and staff have reacted very poorly in a clinical situation.
Notably one of the refugee women participants – Brigid (Sierra Leone) - shared that she was able to advocate for a caesarean section due to experiencing FGM:
Because back in Africa they did the – you know the thing where they cut your private parts – so I was scared that I could – I won't able to push the baby and I told them that I just wanted C-section. They respect my wish.
Other participants, however, felt that, due to experiences of cultural insensitivity by healthcare practitioners, they would always be disadvantaged and receive suboptimal perinatal care. For example, Lisa (Liberia) commented that she felt like a “guinea pig” during her maternity care. Similarly, Ariana (Liberia), suffered a traumatic stillbirth experience in an Australian hospital six years prior to her interview, but felt that she was disadvantaged in her ability to gain information about what happened due to her background:
Each time I think about it I promise myself to never go to that hospital because I was so scared of them. My family talk to me, ‘oh just leave it, you don’t know how to speak English. You are African. This is the hospital. It’s the government hospital. If you sue the government, you won’t get power’.
Finally, some refugee women participants discussed inadequate care for women with acute and significant mental health issues during pregnancy, including suicidality. For example, while Brigid was able to advocate for her needs with regards to having a caesarean section, she also recounted significant experiences of trauma, and shared with the interviewers her multiple suicide attempts as a consequence. At the time of her first interview, she had given birth to three children in Australia, and all had been removed from her care. Speaking in relation to her pregnancy with her first child, when she was in a closed mental health ward at a public hospital in Australia, she said:
I was detained because I was feeling suicidal. So I was detained until I had my daughter [name]. I was in… the closed ward. So I was until – I think I was there for three months until I had my daughter because they were worried for the safety of the baby and the safety of [me] … I didn’t like it there because mixing with other – other people who have – people that have their own mental health issues. I just felt like that wasn’t the kind of place for me. I'm pregnant. What if someone hit me. What if – you know? All those [fears].
In this instance, Brigid recounted care that she did not feel was suitable for her needs in an extremely distressing situation. Brigid’s care in the closed mental health ward is a key example of care which is not responsive to the needs of refugee women, for whom detainment may have particular implications in relation to prior experiences of trauma, and in which the voices of refugee women – in this case Brigid – are not likely to be heard.
Women as equal decision-makers in their perinatal care: The importance of consent and control
As seen in the previous theme, many refugee women felt that they were not adequately acknowledged or cared for during and after their pregnancy, and the ability to have input and some control over experiences was seen as particularly important. In the accounts of refugee women participants, there were few instances of women advocating for their needs and being heard. In one of these instances, Jernora (Liberia) had an emergency caesarian section and fought to see her baby, although not without initially experiencing significant distress when she thought her baby was dead:
I never see my baby until the next day […] I don't believe my baby was alive. In the morning they come told me they say Jernora it's shower time. I said no, I want to see my baby first, see baby is alive. They say yes baby is alive. I say no, I will not take shower… until I see the baby. They took me there.
In most cases, however, women recounted instances of feeling that they were not listened to nor able to have input or control over their experiences – in some cases resulting in feelings of neglect. For example, in addition to feeling that she was asked in appropriate questions, Konnima also indicated that she felt her care was perfunctory and that she was not listened to:
I wasn't feel like I was listened to … it's just like when you go, they tell you, “hop on the bed, check that, and come down. Oh, the baby is fine”. That's it. Sign you off, and you leave … So I feel neglected, actually.
In addition to feeling neglected, some participants felt that their requests were outwardly ignored by medical staff. This was particularly the case in relation to the gender of the midwives attending to women, with most refugee women participants noting a strong preference for women, as would be culturally appropriate in most cases. However, these requests were often ignored, as Lovetya (Liberia) said:
I did have a female and then they switched without telling me. Then when I came in, it was a male. Then I said no, I don’t want to see a male as a midwife. I want a female but even up until now, when I go, I still see male. So it’s basically, I personally feel like it’s just take whatever you get … that’s why now, even I was on Tuesday, I was supposed to go for one of my appointments … but I just felt like “no”. I didn’t go … I don’t feel like going and they even said they want to induce me this week.
As seen in Lovetya’s account, ignoring women’s wishes about aspects of care such as women midwives could lead to disengagement from services, including even not following advice about delivery. Service provider participants also expressed concern over whether all available options were explained well, so that women understood the nature of the care options they were given and the consequences of each option. For example, Joanne (a midwife) talked about a “loss of control” women may feel over decision-making during the perinatal period.
Refugee women – particularly those who had already had children – also discussed the importance of being recognised as knowledgeable about their own pregnancy and childbirth needs. However, most refugee women did not feel that they received this recognition, which in Ariana’s (Liberia) case was perceived to have catastrophic consequences. As noted above, one of Ariana’s babies had been stillborn in Australia, and she recounted the events leading up to this as follows:
The midwife ring the department and told them that “oh the lady (.) the African lady is here, she been crying that oh she’s ready to give birth but water is not breaking. But now I have checked on her, the baby head is right there. She’s ready to give birth”. They [the medical staff] refuse … So they sent me home. When they send me home my baby pass away. Three days in my stomach … the day they [the medical staff] was ready for me to give birth the baby’s gone.
For Ariana, the lack of control and recognition of her own knowledge about her body – as well as her African identity and the associated perceptions of staff - was seen to have a direct impact on the stillbirth of her baby.
Service providers concurred with the importance of ensuring refugee women were given some control over their care, and noted that where this wasn’t the case, feelings of anxiety and loss could develop, even if the pregnancy and birth ultimately went smoothly from a medical perspective:
And the nature of course of maternity care is that things change very quickly and sometimes emergency decisions are made and that’s difficult for anybody, but extra difficult when you’re from that background where you can’t just access all things we can, like talking to somebody and asking your friends. So, I think it’s, it probably does impact on anxiety and maybe like lack of satisfaction about how things have gone. You know, maybe even some loss that they didn’t have that control over what they wanted to happen during the pregnancy. (Ellen, general practitioner)
Another issue concerning control during maternity care specifically expressed by multiple participants was insufficient consent regarding the presence of student midwives. For example, Lovetya indicated that her request that no students be involved when she gave birth to her second child was ignored by hospital staff resulting in significant harm to her wellbeing, particularly given her past experiences and the unprofessional behaviour exhibited by some of the students:
I did request as well was I didn’t want a whole group in the room. I didn’t want the students […] I was circumcised when I was young. I was forced to. Then I did get not rightly circumcised. This is very personal…. I felt like … I know that when somebody sees and you’re used to seeing clits and stuff like that, then when you don’t see it, you’re confused. Then with me as well, when I did get circumcised, I got cut wrongly so all that. I feel like when those students are in, they’re not experienced on facial expressions and stuff. So, it just made me feel a bit… I was in pain but then it’s funny how you’re in pain but your other side of the brain is also concentrating on that part. Like oh, they’re judging me… You shouldn’t care when you’re giving birth but yeah.
As such, Lovetya recounted experiencing loss of control both in relation to the gender of the midwives that cared to her and in relation to the presence of student midwives.
However, other participants described positive experiences in relation to consent, which they found reassuring. For example, during the follow up interview, Bilan (Somalia) indicated that when she gave birth to her baby, the midwives were highly consultative in their care, giving her “courage”:
When I’m in labour, yeah, they’re very, very, very helpful. They talk to me. They say we do the way you like it. They tell me, this is what we can help you if you like this way…. I’m very happy, yeah [they] give me courage. Courage, yeah.
Bilan had previously indicated a high level of satisfaction with the care that she was receiving when interviewed while pregnant: “I’m very satisfied with them and I feel like they give me a good support and I’m very comfortable with them, yeah.” Similarly, Aminata - the only woman to receive continuity of care through a midwifery program - detailed the communicative and adaptive approach to care that her midwife took at all stages of her pregnancy and birth as seen above.
Perinatal healthcare experiences have long-lasting wellbeing implications
Experiences with perinatal healthcare services in Australia – especially those which were negative - were found to have significant and enduring impacts on participants’ wellbeing. For some women, mental health challenges occurred as a result of traumatic birth experiences, such as Ariana’s experience of stillbirth described above:
Since then [the stillbirth of my baby] I’m not normal anymore. To be honest. I’m making myself stronger for my kids.
Like Ariana, other participants discussed psychological coping mechanisms in order to manage their own distressing experiences. Lydia (Burundi, gave birth in Australia eight months prior), reported suppressing difficult thoughts and memories of her birth in order to cope:
My mental health I can say is good because I don’t feel anywhere pain … if something make me [feel] pain [mentally] I don’t think about that. I throw out … I don’t keep in my mind. Always put away because if I think about it I kill myself so put away.
Here, Lydia indicates that while she has experienced negative events so serious that they make her contemplate suicide, she has ways to cope with the emotions these events elicit (namely, not thinking about it).
However, while some women such as Lydia said they had good coping mechanisms, it is noteworthy that for participants who had had babies in Australia, negative experiences with perinatal healthcare services – and the extensive impacts on their wellbeing – catalysed two responses. For some women, the trauma and emotional impacts of their experience instilled determination to pursue better future outcomes, both for themselves and for other women, as in the case of Konnima:
[My perinatal care experience] was very hurtful… I think, with this experience I have, if I get pregnant again, I'll not close my mouth again, because I went through a lot.
For other participants, the extent of their dissatisfaction with care created hesitation around seeking formal perinatal healthcare in the future. Underpinning this apprehension was a perception that perinatal healthcare of a high standard is ‘lucky’ to find for women from African backgrounds, as Lovetya explained:
Because if you’re with the hospital in at [suburb removed] area … a lot of people would be like, “oh they’re so racist”. That’s how they will say to me … “they’re so bad, they don’t even care about you. They don’t”. Yeah, so they’re always telling me I’m lucky to be at the [hospital name removed].
Similarly, service provider participants acknowledged the role previous trauma had to play in the shaping of a woman’s pregnancy, childbirth and parenting experiences. For example, Wendy (a midwife) and Naomi (a refugee health specialist bi-cultural worker) gave clear examples of the bidirectional relationship between trauma and maternity care. Naomi described incidences of women having flashbacks of previous traumatic experiences, while Wendy described the insensitivity of particular maternity practices such as internal examinations in situations such as when a woman has experienced rape. Again, participants called for woman-centred care that fosters sensitivity and understanding in health care professionals:
Yeah sometimes like, women who have been raped or who saw whatever things in the war, when they are pregnant it can come back and lead to mental health ... They can have flashbacks of what they saw or they, what happened. It can lead to mental [illness]
But you know lying on your back with your legs open with a man standing over the top of you kind of talking at you, you know it’s a pretty violating experience for any woman let alone a woman who’s been held down and raped (Wendy).
However, service providers indicated that while “mental health care should just be a part of perinatal care” (Ellen), particularly given the extent of mental illness within many refuge women from Africa, care focused on wellbeing needed to be provided in a way that is culturally sensitive as well as sensitive to past experiences of trauma associated with being from a refugee background. This is particularly important because, as service provider Carla (a midwife) noted, mental health is often “not something you discuss.”
Overall, negative experiences with Australian perinatal healthcare services had significant and enduring impacts on the psychological wellbeing of participants. This theme identifies how these experiences – which may compound previous trauma associated with the refugee experience – can shape the status of women’s mental health into the future and create apprehension towards utilising healthcare services.