The need for trust and safety inducing encounters: a qualitative exploration of women’s experiences of seeking perinatal care when living as undocumented migrants in Sweden
Type of text: Academic article
Published by: BMC Pregnancy and Childbirth
Author: My Barkensjö, Josephine T. V. Greenbrook, Josefine Rosenlundh, Henry Ascher & Helen Elden
Short description of text
In 2013, undocumented migrants’ rights to healthcare in Sweden were expanded to include full access to perinatal care. This study aims to describe women’s experiences of clinical encounters throughout pregnancy and childbirth, when living as undocumented migrants in Sweden.
Most important results
– ‘Experiencing subpar treatment and neglect due to perceived adverse intentions, and/or deficient knowledge and awareness amongst healthcare personnel resulted in the women feeling discriminated against. Such experiences also appeared to cultivate extreme levels of anxiety and fear surrounding utilizing healthcare services. Contrastingly, the participants who took part in this study reported feeling safe and secure when encountering welcoming healthcare professionals who made efforts to provide them with adequate support. This in turn diminished concerns and cautiousness relating to seeking care’ (p. 5).
– ‘Reports of lacking knowledge amongst healthcare professionals surrounding how to approach and relate to undocumented migrant patients were present throughout the data … Ultimately, this deficiency was described as developing substantial obstacles in seeking care’ (p- 6). ‘Mistakes that could occur due to misinformed or misconceived healthcare personnel led to the development of fear amongst the women, largely related to concerns that clinical encounters could consequentially result in the authorities becoming aware of their location – and thus, leading to their deportation’ (p. 6).
– ‘Experiences of having been refused healthcare induced feelings of worthlessness and grief, often leading to a general distrust in healthcare professionals. Due to this lack of faith in the healthcare system, several women reported cancelling pregnancy check-ups, and/or refraining from attending their appointments’ (p. 7).
– ‘Presence of distrust toward interpreters hired by healthcare establishments’ was found, stemming ‘from pre-existing cultural and geographical frictions and conflicts, and resulted in experiences of distress and discomfort when sharing personal details and problems for the interpreters to translate. This issue was apparent throughout the interviews. Due to this absence of interpreters the women felt they could trust, relatives were often pushed to take on the role of interpreter in emergency situations, which could also lead to personal discomfort’ (p. 9).
– ‘Social vulnerability was reiterated as being enhanced during pregnancy, particularly for women with pre-existing children. The threat of being evicted, being homeless, having to move frequently to new settlements, and lacking economic stability resulted in increased levels of anxiety. This in turn exacerbated worries in regard to meeting the basic needs of their unborn baby and pre-existing children’ (p. 10).
– ‘Overall, the participants reiterated the immense importance of engagement and support from NGOs, religious communities, and cultural doulas … For many, economic support from NGOs, such as the provision of bus fare to the ANHC, was essential in facilitating women in attending their booked antenatal care appointments. The provision of volunteer cultural doulas capable of speaking the women’s native language was of immense value, and provided support that extended beyond childbirth. To receive support from a doula with whom they could easily communicate reinforced positive experiences in relation to labor and delivery. Participants also described the value of having someone to advocate for them in complicated situations’ (p. 11).
– ‘Several women in this study’s sample reported having suffered complications, such as preterm delivery, preeclampsia, SGA babies, stillbirth, and postpartum bleeding’ (p. 12).
– ‘Another major finding of the present study was the indication that women living as undocumented migrants could be denied their legal right to healthcare access. Moreover, in cases where healthcare was provided, these women were at risk of suffering subpar treatment and neglect at the hands of healthcare professionals. Being denied access or suffering negative experiences in healthcare settings led to the cultivation of fears of being personally harmed, or of exposing their unborn baby to harm. Ultimately, this resulted in the women refraining from seeking healthcare services, or cancelling booked appointments, increasing the risk of aggravating their conditions’ (p. 12).
– ‘The acute vulnerability in the women’s exposed living circumstances, along with fears of being discovered by authorities, appeared to result in both mental and physical distress. Exhaustion also played a role in the failure to attend booked healthcare appointments. Coping with traumatic memories and struggling with motherhood took its toll, and self-reported insomnia, depression, loss of energy, loss of concentration, loss of appetite, and constant high levels of stress and anxiety were prevalent throughout the interviews conducted’ (p. 13).
An inductive approach, qualitative content analysis. Thirteen women from ten different countries were interviewed, including both undocumented migrants and EU citizens without residency permits who were pregnant and/or had given birth in Sweden. Eight participants were interviewed during their pregnancy, and follow-up interviews post-partum (PP) were carried out with five. Another five were only interviewed PP. Unstructured interviews.
The findings of the study accentuates the importance of policydriven organizational facilitation that ensures healthcare professionals are provided with adequate time and knowledge needed in providing women living as undocumented migrants with flexible treatment. ‘Awareness of the vulnerable position women living as undocumented migrants hold, as well as remaining informed on their needs and their rights is a necessity in facilitating their access to healthcare … Furthermore, it can reduce medical risks, and thus becomes a matter of patient safety and equity’ (p. 13).
– ‘It could be argued that healthcare organizations could improve their approach by learning from, and cooperating with NGOs who cater to migrant women, both registered and undocumented’ (p. 13).
– ‘Pending further empirical explorations, the findings of the present study depict a crucial need for adjusting perinatal care for women living as undocumented migrants to include a focus on the children (both expected and pre-existing), in order to meet specific needs stemming from their highly vulnerable and exposed circumstances’ (p. 14).
– ‘The promotion of an astute awareness amongst practitioners surrounding human rights and the Right to Health, along with a crucial need for dedicated adherence to ethical principles in clinical encounters appear paramount in improving the quality of care delivered. Ultimately, antenatal care could serve as a rich opportunity to identify women in need of further medical assistance, qualified psychological care, and/or psychosocial support during pregnancy in early motherhood, minimizing discrimination in healthcare access, and promoting patient safety and equity’ (p. 15).
Suggestions for further research
– ‘Further research should explore risks relating to mental health during pregnancy and childbirth specifically amongst women living as undocumented migrants. Implications could be consequential in adequately training practitioners with the tools needed to provide informed psychological support during pregnancy, childbirth, and the post-partum phase’ (p. 13).
– ‘Research focusing specifically on mothers living as undocumented migrants, in order to further explore how maternal stress and anxiety during pregnancy and the neonatal phase affects these children throughout childhood, adolescence, and into adulthood’ (p. 14).