Narratives of consent and invisible women: Part 1
Chaired by Dr Samantha HallidayZoom
Consent is the golden principle that determines the legality of most medical treatment. However, whilst choice is the much-vaunted central tenet of maternity care, its importance emphasised in policy documents, the lived experience is often rather different, particularly in the case of women constructed as ‘other’. This class of invisible women includes women with a serious mental illness, women with a learning difficulty, women of colour, women who do not want to be mothers… In each case their ‘choice’, their ‘consent’ is devalued, afforded less significance by societal structures, healthcare professionals and indeed the law.
This panel brings together a range of researchers and practitioners from multiple disciplines to address the issue of choice in the context of reproduction, focussing upon narratives of consent as they pertain to women who all too often are rendered invisible by the law, by the healthcare professionals treating them, or by society. It is led by Dr Samantha Halliday (Durham CELLS), Rebecca Brionne (Birthrights) and Dr Jacqueline Nicholls (UCL).
Session 1, 12 – 13.30, chaired by Sam. Halliday
1. Jacqueline Nicholls: Consent – what mattered to me
2. Sandra Igwe: Black women – our voice matters
3. Rebecca Brione: “It wasn’t about what I wanted”: the experiences of consent of disabled women and women facing disadvantage
4. Emma Brooks: Choice and consent: communicative challenges faced in multilingual antenatal settings
5. Emma Milne: Alcohol abstinence and surveilling the ‘bad’ mother
Consent – what mattered to me Dr Jacqueline Nicholls, Associate Professor in Health Law at the Institute for Women’s Health, University College London.
Choice and consent are cornerstone principles of respectful woman-centred maternity care in which autonomous decision-making is maximally supported. Every woman has the legal right to choose what happens to her body and to be adequately supported in sharing in the decision of whether to consent or reject any care intervention offered to her. The law is clear that consent requires the person not only to understand what the proposed care involves including its risks and benefits and reasonable alternative option, but also for the process of decision-making to be a genuinely shared dialogue in which a woman’s individual values and preferences are addressed.
Unfortunately, many women find that their experience of being asked for their consent is very different. This paper will draw on previous research carried out at UCL looking at women & healthcare professionals experiences of consent. Despite women’s desire to share in decisions about their care via individually tailored dialogues many women do not experience the consent process as one of genuine choice-making in which they are equal partners in their care. Information provision is often considered to be the panacea to a woman’s spoken or unspoken concerns. Yet women do not always receive information in a way that is supportive to them in making a truly autonomous and personal choice, for example, because it is overwhelming in amount or complexity, difficult to apply to their circumstances or is omits to tell them what they not what they want to know. Too often consent consultations frame women as risks to be managed rather than as autonomous individuals with choices to make within their own nuanced personal contexts. This paper will expand on our previous work considering the implications of what matters to women alongside what healthcare professionals think is important in the context of the realities of day to day practice. It will interrogate the assumptions that may underpin these findings and highlight the gap between the law and rhetoric of consent and the experiences of women in practice.
Black women – our voice matters Sandra Igwe, Founder of The Motherhood Group
The birth of both my daughters were under two years apart, in the same hospital, different staff, but I had the exact same inkling that I was not being listened to on both occasions. That my words were not taken seriously, that I had very little choice and above all I was missing the dignity, kindness and respect I had thought would accompany the life changing experience of bringing life into the world. Robbed of the ‘joyous’ experience of giving birth. Ignored, pains dismissed. Silenced.
My concern has been echoed by several black women that have shared similar experiences through The Motherhood Group that I set up to share the black maternal experience.
Like many other black women, I chose to struggle on my own and in silence rather than seek care, just for my words to be carelessly taken out of context, to be judged, shown no empathy. Our voice matters.
Structural racism and black women accessing care had a massive impact on my journey.
A system where public policies, institutional practices, and cultural representations work to reinforce and perpetuate racial inequity.
It wasn’t about what I wanted': the experiences of consent of disabled women and women facing disadvantage Rebecca Brione, Research and Partnerships Officer for Birthrights.
Choice and consent are at the heart of respectful maternity care. All women and birthing people have the right to choose what happens to their body; to be supported and given the information they need to decide whether to consent or decline any given aspect of care. The law is clear that consent requires the person to understand the proposed care and to have the information they need about the risks and benefits that are important to them. Unfortunately, many women and birthing people find that their experience of care is very different. Those who are disabled or facing disadvantage are even less likely than the broader maternity population to be asked for consent, or to have their choices respected. This paper outlines the experiences of consent described in two studies carried out for and by Birthrights, into maternity experiences of people from these groups. In the first study, disabled women described being classified automatically as ‘high risk’, being denied the information they needed to make decisions and having their choices restricted as a result. Three quarters of women facing disadvantage in the second study had experiences in which their choices were not respected, or they were not supported to give informed consent. One quarter described explicitly non-consented interventions. This paper highlights the very significant gap between maternity policy rhetoric and experiences of women and birthing people in practice, and practical changes required to meet their nuanced and personalised care needs.
Choice and consent: communicative challenges faced in multilingual antenatal settings Dr Emma Brooks, Lecturer in Applied Linguistics, University College London
This paper examines the complex considerations posed by multilingualism in contemporary healthcare environments. Taking as a starting point the fact that the linguistic, ethnic and cultural diversity of the NHS workforce mirrors the complex textured landscape of urban populations, I argue that a combination of institutional practices, and coping strategies, designed to facilitate communicative ‘difference’ hold the potential to invisibilise staff and patients alike and subsequently throw in to question what it means to give or gain ‘informed’ consent.
From the perspective of established literature, it is well-documented that migrants may encounter difficulties in accessing services, as well as clinical care that meets their complex needs. Indeed, professional interpreters are generally understood to be critical participants and the pivots around which information is shared, negotiated, digested and acted upon: skilled translation is understood as integral to patient understanding, experience and compliance with advice. On the other hand, mediation is not unproblematic. Triadic interaction increases the distance between medical practitioner and patient and the health literacy of interactants cannot always be assumed. Despite NHS guidelines, alternative methods of language facilitation are often utilised in lieu of professional mediation - in the form of family, friends or translation software: these too can result in unreliable, or inaccurate interpretation. Similarly, misunderstandings are obfuscated when negotiations take place in a language not spoken by the health professional, therefore jeopardising notions of what constitutes ‘informed' consent.
More recent research conducted in diverse settings demonstrates a shift in institutional practices, i.e. where multilingual professionals draw on their personal linguistic and semiotic resources in order to communicate as effectively as they can across language and medical discourses. On close inspection of situated dyadic encounters, interactional analysis reveals a distinct advantage to language concordance as it appears to enhance a sense of alignment, boost feelings of ethnocultural acceptance and improve understanding, thereby mitigating asymmetries. Yet, as with interpreters, 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. More saliently perhaps, as ad-hoc interventions by health workers are more likely to go unrecorded, linguistic resourcefulness may have the unintentional effect of glossing workforce multilingualism and masking community demand for interpreting provision. With institutions neither aware of the demand, nor their own internal ‘resource(s)’, responses to linguistically diverse populations are not only stifled but remain structurally unaccountable.
Existing interpreting and translation guidelines (NHS, 2018) would benefit from revision in the light of a more nuanced reflection on contemporary communication and a heightened awareness of the role of language in health inequalities. It is only when assumptions are disrupted and conventions reimagined, that we can begin to understand what we mean by adequate facilitation of informed consent.
Alcohol abstinence and surveilling the “bad” mother Dr Emma Milne, Assistant Professor in Criminal Law and Criminal Justice, Durham University
Despite there being no evidence to support the claim that small amounts of alcohol causes harm to a foetus or breastfeeding baby, public health messages continue to promote abstinence only, stating there is no safe limit of alcohol consumption for pregnant or breastfeeding women. In previous research, I, with Professor Betsy Thom and Dr Rachel Herring, have conclude that official messages from government and health sources employ popular tropes of the ‘good’ mother and urge women to act in the best interests of the foetus. Furthermore, official guidance and advocacy sources have become increasingly consistent regarding the way in which alcohol consumption during pregnancy is framed in terms of risk to the foetus, whereas research studies indicate more diverse and nuanced views among midwives.
This paper will expand on our previous work, considering the implications of messages of alcohol abstinence in the context of representations of motherhood. The findings will be contextualised within a risk framework and feminist analysis of idealised motherhood. As such, the concept of ‘consent’ by women to receive and adhere to such messages will be considered.