Frames of decision-making in prenatal consultations in England and France. Towards a sociological, relational, and processual approach to autonomy

Rationale, aims and objectives The article looks at how, during consultations, pregnant women identified as presenting an increased risk of giving birth to a child with an impairment, and practitioners in the field of prenatal diagnosis, decide whether or not to accept the risk of a miscarriage and proceed with a diagnostic examination. Methods We conducted 63 observations of consultations in France and 22 in England. Participants were women for whom an elevated risk of abnormality had been identified and the practitioners involved in their care. Our analytical approach consisted in suspending the normative concepts of non-directiveness and autonomy, and in drawing on Goffman’s (1974) notion of “frame” to take account of the experiential and structural aspects that the protagonists bring into the (inter)actions. Results We identified four frames: medico-scientific expertise, medical authority, religious authority and compassion. Observation of the ways in which the frames intertwine during consultations revealed configurations that facilitate or hinder the fluidity of the interactions and the decision-making process. The medico-scientific expertise frame, imposed by the guidelines, heavily dominated our observations, but frequently caused distress and misunderstanding. Temporary or sustained use of the compassion and/or medical authority frames could help to repair the discussion and create the conditions that enable women/couples to reach a decision. Variations in configuration highlighted the differences between practitioners in the two countries. Conclusions Combining frames allows protagonists to exert reflective abilities and to maintain/restore interactions. The frame analysis promotes a vision of autonomy that is sociological, relational and processual rather than philosophical. The frames are anchored in different structural conditions in England and France

Pregnancy termination for fetal abnormality: ambivalence at the heart of women’s experience

The aim of this article is to demonstrate the centrality of ambivalence in women’s experience of pregnancy termination for fetal abnormality (TFA). Data were collected from two qualitative studies conducted in England and France with women who had undergone TFA (n = 44). The findings point to eight manifestations of ambivalence throughout the process of TFA: hope and despair, a choice but no choice, standing still and rushing, bonding and detaching, trauma and peace, disclosure and secrecy, bridging past and future, and individual and societal experience. Women’s ambivalence illustrates their internal struggle to reconcile the act of termination with their desire to become mothers. It also reflects societal tensions regarding abortion and disability. We argue that the absence of normative responses, social desirability bias and the potentially confusing coexistence of the fields of prenatal diagnosis and social integration of people with disability account for the ambivalence women feel as they go though TFA. As women’s ambivalence may impact upon the way they adjust to TFA, it is important to remain cognisant of the complexity of TFA to support women appropriately

Prenatal diagnosis: Women’s interactions with practitioners when severe abnormalities are discovered at birth

Background: In an increasingly litigious medical environment, this study examined women’s experiences of their interactions with practitioners when severe abnormalities are discovered at birth. Methods: Eight in-depth interviews with women were conducted in France. Data were analysed using Interpretative Phenomenological Analysis. Results: Four superordinate themes were identified: the importance of attunement to women’s emotions and needs; the possibility of litigation but no direct accusation; reasons for not resorting to litigation; and reframing and positive transformations. Despite experiencing distress, women were reluctant to make a complaint against practitioners. Several factors may account for this, but practitioners’ ability to relate to women with humanity was particularly significant. Conclusion: Women understood the limits of technology and of the care practitioners can provide, but greatly valued practitioners’ empathic and honest communications. Thus, adopting a transparent and open approach may foster trusting relationships with women/parents. In turn, this may lower the prospect of litigation being brought against practitioners when severe abnormalities are discovered at birth

The Development of a Quantitative Survey on Construction of Identity

Survey Methodology, Identity Affiliations, Mobility

PPF PHS – Handicap et sciences sociales

Isabelle Ville, Jean-François Ravaud, directeurs de recherche à l’INSERMEmmanuelle Fillion, maître de conférences à l’Université de Bretagne Occidentale Mobilisations et identités collectives dans le champ du handicap et de la santé Ce séminaire inauguré cette année s’est déroulé à la Maison des sciences sociales du handicap récemment créée. Une traduction en langue des signes était assurée ainsi que l’accessibilité de la salle. Les trois premières séances ont posé le cadre historique et théo..

Handicap et sciences sociales

Jean-François Ravaud, directeur de recherche à l’INSERMIsabelle Ville, chargée de recherche à l’INSERMMyriam Winance, chargée de recherche au CNRS Le handicap : histoire politique, pratiques sociales et expériences intersubjectives Le séminaire a abordé la catégorie contemporaine du handicap en l’inscrivant dans une histoire longue afin d’en dégager les évolutions et les permanences notamment dans les rapports qu’elle entretient avec la pauvreté et l’assistance d’une part, le travail d’autre ..

Why do French women refuse to have Down's syndrome screening by maternal serum testing? A mixed methods study

Purpose: The study aims to analyse the reasons underpinning women's refusal to undertake Down's syndrome screening (DSS) by maternal serum testing (MST). Methods: A retrospective, mixed methods sequential approach was used. An online survey on women's experience of prenatal testing followed by in-depth interviews were conducted, with women over 18 years old, who had been pregnant within five years prior to the study. Altogether, 1726 responses were gathered, of which 217 related to women who had refused MST. The study compares the women who refused MST with women who accepted it on sociodemographic characteristics, the evolution and experience of the pregnancy, their knowledge about Down's syndrome (DS). It also utilises survey comments and five in-depth interviews to explore, using Thematic Analysis, the reasons for refusing MST. Results: To refuse MST is cognitively demanding. Indeed, women who refused MST were better educated, knew more about prenatal diagnosis sequences and DS than women who accepted it. This position is also emotionally challenging as women's interactions with practitioners can put them in difficult situations, where they have to defend their point of view. Reasons for refusing MST go beyond religious beliefs, negative attitudes towards abortion and/or medicalisation of pregnancy. Rather, women's position appears to be driven by a holistic conception of care-based monitoring, values of inclusivity and a desire to remain in control of their pregnancy. Conclusions: It is essential that women feel accepted and supported in their choice to refuse MST. Consequently, it is important for professionals to remain cognisant of the diversity of factors underpinning women's decision, the pressure this position generates and the challenges that come with it

Insights from global environmental governance

This collection of essays brings together scholars from various disciplines, based on three continents, with different theoretical and methodological interests, but all active in the subfield of global environmental governance (GEG). Each of them reviews the emerging literature around one specific conceptual innovation of GEG, related to one of the two core themes of GEG: International regimes or non-state actors. Beyond a review of the literature, each contribution hypothesizes on the reasons why GEG played a pioneer role in this concept and discusses its transferability to other subfields of IR

Comparison of phenotypic and genotypic diagnosis of acute human bocavirus 1 infection in children

Background: Diagnosis of human bocavirus 1 (HBoV1) has been based on qualitative PCRs detecting HBoV1 DNA or detection of HBoV1 mRNA. Objective: This study aims to assess whether a rapid and automated HBoV1 antigen test is suitable for diagnosis of acute HBoV1 infection. Study design: HBoV1 antigen detection has been compared with quantitative HBoV1 DNA PCR and HBoV1 mRNA RT-PCR. Results and conclusion: We conclude that HBoV1 antigen detection has higher clinical specificity and positive predictive value than HBoV1 DNA qualitative PCRs, yet a lower sensitivity than HBoV1 mRNA detection. Additionally, HBoV1 antigen detection is beneficial in its rapidity and availability as a point-of-care test.Peer reviewe

The ANTENATAL multicentre study to predict postnatal renal outcome in fetuses with posterior urethral valves: objectives and design

Abstract Background Posterior urethral valves (PUV) account for 17% of paediatric end-stage renal disease. A major issue in the management of PUV is prenatal prediction of postnatal renal function. Fetal ultrasound and fetal urine biochemistry are currently employed for this prediction, but clearly lack precision. We previously developed a fetal urine peptide signature that predicted in utero with high precision postnatal renal function in fetuses with PUV. We describe here the objectives and design of the prospective international multicentre ANTENATAL (multicentre validation of a fetal urine peptidome-based classifier to predict postnatal renal function in posterior urethral valves) study, set up to validate this fetal urine peptide signature. Methods Participants will be PUV pregnancies enrolled from 2017 to 2021 and followed up until 2023 in >30 European centres endorsed and supported by European reference networks for rare urological disorders (ERN eUROGEN) and rare kidney diseases (ERN ERKNet). The endpoint will be renal/patient survival at 2 years postnatally. Assuming α = 0.05, 1–β = 0.8 and a mean prevalence of severe renal outcome in PUV individuals of 0.35, 400 patients need to be enrolled to validate the previously reported sensitivity and specificity of the peptide signature. Results In this largest multicentre study of antenatally detected PUV, we anticipate bringing a novel tool to the clinic. Based on urinary peptides and potentially amended in the future with additional omics traits, this tool will be able to precisely quantify postnatal renal survival in PUV pregnancies. The main limitation of the employed approach is the need for specialized equipment. Conclusions Accurate risk assessment in the prenatal period should strongly improve the management of fetuses with PUV