Translating informed consent
in maternal healthcare and beyond
This online event took place on Friday 7 October 2022
Thank you very much to all the participants!
Abstracts can be found below.
Informed consent is integral to maternity care. Throughout pregnancy, labour, birth, and the postnatal period, the childbearing woman or person, or parents, are regularly required to provide either verbal or written consent for any care, action, or intervention. Without this explicit consent no action can be undertaken. For people with limited host language proficiency, giving consent without full understanding of the medical language can be a significant issue, especially when the decisions taken have far-reaching consequences for the health of the parent and the baby.
Evidence shows that perinatal outcomes for childbearing women or people from minority ethnic backgrounds are much poorer than for those from majority backgrounds. Factors that contribute to these poorer outcomes include language barriers that limit the people giving information about their own well-being or needs, understanding the information provided, and providing consent.
In line with our project’s aims of bringing different perspectives together in maternal health, this colloquium was open globally to researchers and practitioners with an interest in the translation and interpreting of informed consent in maternal and neonatal healthcare, as well as those working on other aspects of healthcare. We believe that such cross-professional and multidisciplinary conversations are key to understanding the impediments to optimum care in the case of childbearing women or people with limited host language proficiency.
The colloquium hosted U.K. and international researchers in midwifery, obstetrics, translation and interpreting studies, medical ethics, medical anthropology, medical/health humanities, among other areas, and practitioners in these fields.
The questions we explored included:
- Issues regarding the translation and interpreting of informed consent antenatally, during labour and birth, and postnatally
- Good practice in and better integration of translation and interpreting in the context of maternal health
- Translation technologies used during pregnancy, labour and birth (e.g. video-interpreting, telephone interpreting, translation apps)
- Informed consent as a fulfilment of legal obligations and informed consent as an ethical prerequisite in the communication between healthcare staff and parents
- Experiences and research in other healthcare areas that may be of benefit to the translation of informed consent in maternal healthcare
Programme (all times indicated are British Summer Time)
9:15-9-40 Hannah Rayment-Jones (King’s College London)
9:40-10:05 Li Li (University of East Anglia)
10:05-10:30 Luciana Carvalho Fonseca (University of São Paolo and University of Leipzig)
10:30-10:45 Tea/coffee break
10:45-11:10 Vicent Montalt (Universitat Jaume I)
11:10-11:35 Jemina Napier (Heriot-Watt University)
11:35-12:00 Andrea Ford (University of Edinburgh)
12:00-13:00 Lunch break
13:00-14:30 Roundtable and general discussion with the audience
Roundtable guest speaker: Rebecca Gilbert (London Maternity Clinical Networks)
14:30-14:45 Tea/coffee break
14:45- 15:10 Rebecca Brione (King’s College London)
15:10-15:35 Jenny Patterson (Edinburgh Napier University) and Şebnem Susam-Saraeva (University of Edinburgh)
15:35-16:00 Emma Brooks (University College London)
Rebecca Brione, King’s College London
Interpretation and silencing on the maternity ward: a view from philosophy
“Words are tools. Words are for doing things with.” So says Rae Langton, in her famous paper Speech Acts and Unspeakable Acts. This is particularly apparent in the context of maternity care, in which women and birthing people are encouraged to use words to make choices, personalise their care, and make decisions about what is – and is not – done to their bodies. Both maternity policy and the law provide for this, centring personal choice and values, and upholding the person’s absolute right to say ‘no’ to interventions and care that they do not want.
We know that this does not always work in practice. Langton says, “There is little point in giving someone tools if they cannot do things with them”. Too often women and birthing people report going unheard and silenced in their choices, despite the policy and legal framework. That is, their tools remain blunt. Yet some people are not even handed the toolbox in the first place. Those without English, those without fluent English, and those whose interpreters lack healthcare or consent literacy have no access at all to the most basic tools that are theoretically made available to everyone else. This places them at direct risk of physical and psychological harm, and places healthcare professionals caring for them in a legally and ethically untenable position.
This paper explores what speech act theory can tell us about the particular form of silencing that occurs when women and birthing people are provided with no, or inadequate, interpretation support during labour care. It draws on lived experience of women who asked for, and were denied, the tools that they needed to manage what happened to their bodies at a uniquely exposed time. It also asks if an institutional failure to provide sharp and effective tools to women and birthing people also effectively silences the healthcare professionals who work with them.
Rebecca Brione is a PhD student in Philosophy and Medicine at King’s College London. Her research aims to conceptualise harm in non-consented vaginal examination. She has a broad interest in consent during maternity care & co-leads a research network on ‘Narratives of consent and invisible women’. She previously worked for the UK human rights charity Birthrights.
Emma Brooks, University College London
‘Interpreter required?’: negotiating consent in a linguistically diverse space
Drawing on findings from linguistic ethnographic research in an NHS London hospital, this paper takes as a starting point the fact that the linguistic, ethnic and cultural diversity of the workforce mirrors that of the community it serves. As such, the interplay between established institutional practices designed to facilitate communicative ‘difference’ and the linguistic resourcefulness of medical staff in the face of unpredictable interpreter provision gives rise to a translanguaging space (Li, 2018). Disrupting binarizations of repertoire, multilingual professionals are seen to draw on their personal linguistic and semiotic resources in order to communicate as effectively as they can across language and medical discourse. Perhaps unsurprisingly, on close inspection of situated dyadic encounters, interactional analysis reveals distinct advantages to shared repertoires. A flexible linguistic approach appears to enhance a sense of alignment, boost feelings of ethnocultural acceptance and improve understanding and thereby goes some way to mitigating the kinds of asymmetries thought to be inherent to patient/provider interaction. Yet, as established literature on (intercultural) health communication has shown, the ability to utilise shared language(s) does not provide a panacea for (mis)understandings. Linguistic concordance may not always be sufficient to navigate the epistemic comprehension so central to notions of patient-centred care and informed consent. This study highlights nuanced tensions between institutional and personal approaches to languaging practices in a healthcare context, noting that while flexible repertoires offer the potential to contribute to feelings of wellbeing, there exist complex paradoxes upon which there is an ethical responsibility to reflect.
Emma Brooks is a lecturer in applied linguistics at Birkbeck, University of London and holds an honorary postdoctoral research fellowship at UCL. Her research focuses on the communicative characteristics associated with diverse populations and the intersection between language, migration and health inequalities.
Luciana Carvalho Fonseca, University of São Paolo and University of Leipzig
Informed consent in maternal healthcare and the coloniality of language
Brazil displays one of the highest cesarean rates in the world, with the national average being 52%. This percentage exceeds 90% in certain private maternity hospitals. It is also estimated that one in every four women experience obstetric violence. Giving birth in an informed, respectful, and fulfilling way in such a context is no small achievement. In this presentation, I adopt a decolonial feminist perspective on women’s health, in which reproductive rights are part of the struggle against patriarchal domination, capitalist exploitation and coloniality. Translating and interpreting in women’s health require professionals and/or ad hoc interpreters be aware of the many forms of oppression affecting different groups of women. A particularly vulnerable group are Latin American migrant and refugee women in Brazil. Due to the large migratory flows, it is estimated today that worldwide 15 to 30% of women give birth outside their country of origin and research indicates that migrant women have a worse childbirth experience, one of the reasons being the language barrier. This paper aims at discussing the language barrier from the perspective of the ‘coloniality of language’ in the context of the Brazilian colonial (and colonized) racist-by-denegation patriarchy. “What is language?” and “Who is capable of language?” are the questions I will discuss by analyzing informed consent in maternal healthcare in the light of the Brazilian healthcare system and decolonial thought.
Luciana Carvalho Fonseca is an experienced interpreter and translator, and an Assistant Professor of English and Translation at the University of São Paulo, Brazil. She is currently a visiting researcher at the University of Leipzig and visiting scholar at the Erasmus University Rotterdam. Her research interests include feminist translation and decoloniality.
Andrea Ford, University of Edinburgh
I am a medical anthropologist researching the culture of women’s*/reproductive healthcare in the UK and US, and a practicing birth doula (a trained support person without medical responsibility). I research the non-linguistic aspects of communication in the birth room, and argue that these must be central to how practitioners think about informed consent. In this talk, I describe how conventional ideas about ‘informed consent’ operate on the model of a contract between equal parties; this type of consent can be used defensively against litigation, and is common in medical institutions. But the power dynamics in the birth room and the intense experience of giving birth mean that all parties are not equally able to contribute to decisions being made. Instead, trust, care, and sensitivity must be used to interpret the birthing person and create an environment where she can make choices and her desires are accounted for. I call this ‘attuned consent’, a way of paying attention to the birthing person that is highly embodied, is non-coercive without presuming equality between the parties, and acknowledges ambiguity and complexity. Doulas and many midwives are trained to pay attention in this way. Attuned consent could be made more central to medical protocols, education, and law, especially in mediating birth experiences.
Andrea Ford is a cultural and medical anthropologist and research fellow at the Centre for Biomedicine, Self and Society at the University of Edinburgh. She received her PhD in anthropology from the University of Chicago in 2017. Her research is at the intersection of reproductive and environmental health and justice. She is also a practicing doula.
Li Li, University of East Anglia
Maternity Interpreting in the UK: interpreters’ perspectives
Evidence shows persistent, significant racial inequalities in maternal mortality rates in the UK (Hinton et al., 2021). Even though multiple social risk factors may contribute to these inequalities, language barriers exacerbate risks experienced by the culturally and linguistically diverse (CALD) communities who need interpreting and translation services to access maternity care (Rayment-Jones et al., 2021). Currently, interpreting and translation services are recommended to address language barriers (NHS England, 2018). However, a 2022 rapid review of ethnic inequalities in maternal healthcare undertaken by the NHS Race and Health Observatory highlighted a lack of adequate interpreting services in the UK (Kapadia et al., 2022). Moreover, with recent technological advancements and COVID-imposed remote working, very little is known from interpreters’ perspectives about video-mediated interpreting in maternity settings in the UK.
This study presents some preliminary findings from an interpreters’ survey conducted from March to June 2022 in the UK to address the following questions:
- What are the main challenges in providing interpreting in maternity settings in the UK?
- Which interpreting modalities, i.e., face-to-face, telephone, or video-mediated interpreting, are currently utilised in maternity settings in the UK? What are interpreters’ preferences, and why?
- What are good practices (video-mediated) interpreting in the context of maternal health?
Of the 130 responses covering 41 languages and dialects, 68.97% of interpreters assisted with obtaining informed consent in maternity settings. However, video-mediated interpreting in maternity settings in the UK is still scarce. A collaborative approach is needed to integrate video-mediated interpreting in the context of maternal health. Effective utilisation of interpreting modalities is indispensable in tackling language barriers in maternity and healthcare settings in the UK.
Li Li is a CHASE-AHRC-funded PhD candidate at the University of East Anglia, researching the effective use of (remote) maternity interpreting services. She has worked as a lecturer and course director for MA Conference Interpreting & Translation. She is a member of the Institute of Translation and Interpreting (ITI) and the Chartered Institute of Linguists (CIOL). She practices mainly in legal, business or conference settings.
Vicent Montalt, Universitat Jaume I
The meaningful Informed Consent in patient-centred care
Informed Consent (IC) is a crucial genre in healthcare which is not always carried out in an adequate way. Asking for permission to do something to patients and obtaining their consent is a fundamental ethical principle of good practice. Asking for permission involves, ideally, explaining whatever is to be done to the individual patient in a way that is comprehensible and relevant to them. In healthcare, IC is performed in the context of doctor-patient communication, where asymmetries between the two participants exist and may have a negative impact on communication. In principle, the doctor explains to the patient the treatment or procedure, its possible side effects, and the alternatives available, so that the patient can make an informed decision. But in reality, there are shortcomings. In this presentation, I will focus on IC as it is used in multilingual and multicultural healthcare settings, where interpreters and translators deal with problems and make decisions regarding interactions and texts. My aims are (1) to bring to the fore the ethical, translational and interactional dimensions of IC, (2) to critique the hollow IC and (3) to discuss some of the basic conditions for a meaningful IC in multilingual healthcare settings. Beyond its medico-legal validity, meaningfulness for the patient is of vital importance in the real practice of IC in patient-centred care, and translators and interpreters can play an active role in achieving it.
Vicent Montalt teaches and researches at the Department of Translation and Communication Studies, Universitat Jaume I (UJI), Spain. He is director of the Master’s Programme in Medical and Health Translation and the research institute López Piñero (IILP), both at UJI. He is a regular visiting professor at CenTraS, University College London.
Jemina Napier, Heriot-Watt University
Access to maternal healthcare information for deaf women who use sign language
This paper will present data from research in other healthcare areas that may be of benefit to the translation of informed consent in maternal healthcare. I will present data from a study of preventative and on-going healthcare communicative requirements of deaf signers (Napier & Kidd, 2013; Napier, et al., 2014). One hundred members of the Australian deaf community discussed their perceived health information and access communicative needs through face-to-face interviews conducted in Auslan (Australian Sign Language) by deaf research assistants throughout Australia. The video-recorded interviews were analysed to identify key themes and issues, and when focusing on issues related to maternal healthcare it can be seen that there are key issues in relation to lack of access to information, inaccessible videos, and lack of informed consent. There are, however, examples of best practices from other countries which will also be shared. The key message from the data is that deaf women must be asked if they are satisfied with the information they are receiving, and assumptions should not be made about what information they can access. There is very little research on deaf women’s access to maternal healthcare, so this paper will make recommendations for future research.
Jemina Napier is Chair of Intercultural Communication at Heriot-Watt University. She is a Corresponding Fellow of the Australian Academy of Humanities and a Fellow of the Association of Sign Language Interpreters UK. She conducts interdisciplinary linguistic, social and ethnographic explorations of direct and mediated communication in sign languages to inform interpreting studies, applied linguistics and deaf studies.
Hannah Rayment-Jones, King’s College London
Project20: interpreter services for pregnant women with social risk factors in England: what works, for whom, in what circumstances, and how?
Background: Black and minority ethnic women and those with social risk factors such as deprivation, refugee and asylum seeker status, homelessness, mental health issues and domestic violence are at a disproportionate risk of poor birth outcomes. Language barriers further exacerbate this risk, with women struggling to access, engage with maternity services and communicate concerns to healthcare professionals. To address the language barrier, many UK maternity services offer telephone interpreter services. This study explores whether or not women with social risk factors find these interpreter services acceptable, accessible and safe, and to suggest solutions to address challenges.
Method: Realist methodology was used to refine previously constructed programme theories about how women with language barriers access and experience interpreter services during their maternity care. Twenty-one longitudinal interviews were undertaken during pregnancy and the postnatal period with eight non-English speaking women and their family members. Interviews were analysed using thematic framework analysis to confirm, refute or refine the programme theories and identify specific contexts, mechanisms and outcomes relating to interpreter services.
Results: Women with language barriers described difficulties accessing maternity services, a lack of choice of interpreter, suspicion around the level of confidentiality interpreter services provide, and questioned how well professional interpreters were able to interpret what they were trying to relay to the healthcare professional during appointments. This resulted in many women preferring to use a known and trusted family member or friend to interpret for them where possible. The interviews provide detailed insight into how poor-quality interpreter services impact on the women’s ability to disclose risk factors and communicate concerns effectively with their healthcare providers. A refined programme theory puts forward mechanisms to improve their experiences and safety such as regulated, high-quality interpreter services throughout their maternity care, in which women have choice, trust and confidence.
Conclusions: The findings of this study contribute to concerns highlighted in previous literature around interpreter services in the wider healthcare arena, particularly around the lack of regulation and access to high-quality interpretation. This is thought to have a significant effect on pregnant women who are living socially complex lives as they are not able to communicate their concerns and access support. This not only impacts on their safety and pregnancy outcomes, but also their wider holistic needs. The refined program theory developed in this study offers insights into the mechanisms of equitable access to appropriate interpreter services for pregnant women with language barriers.
Hannah Rayment-Jones is a midwife and current post-doctoral research fellow in the Department of Women and Children’s Health at King’s College London. Her research focuses on maternal and newborn health inequalities. She currently holds a NIHR Development and Skills Enhancement award and is focusing her development on health data science with an aim to improve the reporting and recording of ethnicity and socioeconomic status in maternity care.
Şebnem Susam-Saraeva (University of Edinburgh) and Jenny Patterson (Edinburgh Napier University)
Translating informed consent in Scottish maternity services
The paper will report on the preliminary findings of an ongoing RSE-funded project on informed consent during pregnancy, labour and birth in the case of parents with limited English-proficiency (LEP) in Scotland (e.g. refugees and asylum seekers who have recently arrived at the country).
Background: It is often difficult for LEP parents to access adequate information in their own languages during perinatal care and this greatly contributes to poor maternal outcomes. Informed consent is integral to maternity care. No care, action or intervention should be provided during labour, birth or the postnatal period without explicit consent from the pregnant person or parents (limited exceptions exist in extreme emergency situations or where there is limited capacity). Pregnant or birthing people are regularly required to provide either verbal or written consent throughout their maternity care. The informed aspect of consent is key in this study. For birthing people or parents with LEP, giving consent without full understanding of the English medical language can be a significant issue, especially when the decisions taken have far-reaching consequences for the health of the mother and the baby. Evidence shows that perinatal outcomes for women and birthing people from minority ethnic backgrounds are much poorer than for those from white backgrounds.
Objective: The main objective is to understand the issues surrounding informed consent when engaging with birthing people or parents with LEP from an interdisciplinary perspective of midwifery and translation & interpreting studies. By bringing together the perspectives of different people who support and look after birthing people, this project has encouraged inter-disciplinary and cross-professional conversations, which are currently limited in practice due to time restrictions and sometimes poorly perceived expectations and prejudices.
Participants and methodology: The project has brought together diverse participants: midwifery and translation studies researchers; healthcare providers; and interpreters. Data was collected through expert focus groups and interactive workshops. Conversations were audio recorded and transcribed. Qualitative methods including Framework Analysis will be used to analyse the data and identify key themes that arise.
Results and discussion: The results so far help us to understand the multidisciplinary factors that help or hinder language barriers so that care provision can be improved for birthing women, people or parents with LEP, in particular with regard to giving information about their own wellbeing or needs, understanding the information provided, and providing consent. We hope this improves maternal outcomes in these populations.
Jenny Patterson is a midwifery lecturer at Edinburgh Napier University, Scotland. Jenny’s work as a midwife since 2007, both independently and in the NHS, led to her particular interest in women’s traumatic birth experiences and midwives work-related trauma. Jenny’s PhD thesis explored the woman/midwife interaction, a significant factor in the development of Post Traumatic Stress Disorder (PTSD) post-birth for childbearing women.
Şebnem Susam-Saraeva is a Senior Lecturer in Translation Studies at the University of Edinburgh, Scotland. She is the co-editor of the Routledge Handbook of Translation and Health (2021, with Eva Spišiaková), which includes a chapter on ‘Translation in maternal and neonatal health’ (2021, Susam-Saraeva with Luciana Carvalho Fonseca). She is also a practising doula since 2009 and is a co-facilitator on the Mother Tongue project hosted by Doulas without Borders since 2020.