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

ELSMOR – towards European Licensing of Small Modular Reactors: Methodology recommendations for light-water small modular reactors safety assessment

Decarbonization of energy production is key in today’s societies and nuclear energy holds an essential place in this prospect. Besides heavy-duty electricity production, other industrial and communal needs could be served by integrating novel nuclear energy production systems, among which are low-power nuclear devices, like small modular reactors (SMRs). The ELSMOR (towards European Licensing of Small Modular Reactors) European project addresses this topic as an answer to the Horizon 2020 Euratom NFRP-2018-3 call. The consortium includes 15 partners from eight European countries, involving research institutes, major European nuclear companies and technical support organizations. The 3.5-year project, launched in September 2019, investigates selected safety features of light-water (LW) SMRs with focus on licensing aspects. Providing a comprehensive compliance framework that regulators can adopt and operate, the licensing process of such SMRs could be optimized, helping their deployment. In this prospect, as a result of ELSMOR’s work, this article gives an overview of the specific issues that LW-SMRs may bring about in the different domains of nuclear safety, in terms of: Methodological standpoints: safety goals, safety requirements, safety principles (defence-in-depth implementation); Main safety functions of reactivity control, decay heat removal and confinement management; Severe accident management; Other safety issues particular to SMRs: use of shared systems; performing of multi-unit probabilistic safety assessment (PSA); refuelling, spent fuel management, transport and disposal management. In this article, adequate methodologies are developed to deal with these issues and to help assess the safety of LW-SMRs. This work gives a precious synthesis of the safety assessment issues of LW-SMRs and of the associated methodologies developed in the context of the ELSMOR European project. The removal of fossil fuels in energy production is very important in today’s societies and nuclear energy plays an essential role in this. Besides large-scale electricity production, other industrial and communal needs could be solved by using new nuclear energy production systems, among which are low-power nuclear devices, like small modular reactors (SMRs). The ELSMOR (towards European Licensing of Small Modular Reactors) European project looks at this topic as an answer to the Horizon 2020 Euratom NFRP-2018-3 initiative. This project includes 15 partners from eight European countries, involving research institutes, major European nuclear companies and technical support organizations. The 3.5-year project, started in September 2019, investigates selected safety features of light-water (LW) SMRs with a focus on the licensing aspects. Providing a comprehensive compliance framework that regulators can use and operate, the licensing process of such SMRs could be optimized, helping their deployment. With this prospect, this article gives an overview of the specific subjects that LW-SMRs may bring in the different areas of nuclear safety (in particular: safety goals, safety requirements, nuclear safety functions: reactivity control, decay heat removal and confinement management, etc..). In this article, methods are developed to deal with these new subjects and to help assess the safety of LW-SMRs. This work gives an overview of the safety assessment issues of LW-SMRs and of the associated methods developed in the context of the ELSMOR European project