The COVID-19 pandemic restrictions affect provision and quality of neonatal care. This global study explores parents’ experiences regarding the impact of the restrictions on key characteristics of infant and family-centred developmental care (IFCDC) during the first year of the pandemic. For this cross-sectional study, a pre-tested online survey with 52 questions and translated into 23 languages was used to collect data between August and November 2020. Parents of sick or preterm infants born during the pandemic and receiving special/intensive care were eligible for participation. Data analysis included descriptive statistics and statistical testing based on different levels of restrictive measures. In total, 2103 participants from 56 countries provided interpretable data. Fifty-two percent of respondents were not allowed to have another person present during birth. Percentages increased with the extent of restrictions in the respondents’ country of residence (p = 0·002). Twenty-one percent of total respondents indicated that no-one was allowed to be present with the infant receiving special/intensive care. The frequency (p < 0·001) and duration (p = 0·001) of permitted presence largely depended on the extent of restrictions. The more restrictive the policy measures were, the more the respondents worried about the pandemic situation during pregnancy and after birth. COVID-19 related restrictions severely challenged evidence-based cornerstones of IFCDC, such as separating parents/ legal guardians and their newborns. Our findings must therefore be considered by public health experts and policy makers alike to reduce unnecessary suffering, calling for a zero separation policy. EFCNI received an earmarked donation by Novartis Pharma AG in support of this study.

Objectives The COVID-19 pandemic has disrupted healthcare systems, challenging neonatal care provision globally. Curtailed visitation policies are known to negatively affect the medical and emotional care of sick, preterm and low birth weight infants, compromising the achievement of the 2030 Development Agenda. Focusing on infant and family-centred developmental care (IFCDC), we explored parents’ experiences of the disruptions affecting newborns in need of special or intensive care during the first year of the pandemic. Design Cross-sectional study using an electronic, web-based questionnaire. Setting Multicountry online-survey. Methods Data were collected between August and November 2020 using a pretested online, multilingual questionnaire. The target group consisted of parents of preterm, sick or low birth weight infants born during the first year of the COVID-19 pandemic and who received special/intensive care. The analysis followed a descriptive quantitative approach. Results In total, 1148 participants from 12 countries (Australia, Brazil, Canada, China, France, Italy, Mexico, New Zealand, Poland, Sweden, Turkey and Ukraine) were eligible for analysis. We identified significant country-specific differences, showing that the application of IFCDC is less prone to disruptions in some countries than in others. For example, parental presence was affected: 27% of the total respondents indicated that no one was allowed to be present with the infant receiving special/intensive care. In Australia, Canada, France, New Zealand and Sweden, both the mother and the father (in more than 90% of cases) were allowed access to the newborn, whereas participants indicated that no one was allowed to be present in China (52%), Poland (39%), Turkey (49%) and Ukraine (32%). Conclusions The application of IFCDC during the COVID-19 pandemic differs between countries. There is an urgent need to reconsider separation policies and to strengthen the IFCDC approach worldwide to ensure that the 2030 Development Agenda is achieved.

Background: Egg freezing has emerged as a technology of assisted reproductive medicine that allows women to plan for the anticipated loss of fertility and hence to preserve the option to conceive with their own eggs. The technology is surrounded by value-conflicts and is subject to ongoing discussions. This study aims at contributing to the empirical-ethical debate by exploring women’s viewpoints on egg freezing in Austria, where egg freezing for social reasons is currently not allowed.Methods: Q-methodology was used to identify prevailing viewpoints on egg freezing. 46 female participants ranked a set of 40 statements onto a 9-column forced choice ranking grid according to the level of agreement. Participants were asked to explain their ranking in a follow-up survey. By-person factor analysis was used to identify distinct viewpoints which were interpreted using both the quantitative and the qualitative data.Results: Three distinct viewpoints were identified:(1) “women should decide for themselves”,(2) “we should accept nature but change policy”, and (3) “we need an informed societal debate”. These viewpoints provide insights into how biomedical innovations such as egg freezing are perceived by women in Austria and illustrate the normative tensions regarding such innovations.Conclusions: Acknowledging the different prioritizations of values regarding assisted reproductive technologies is important to better understand the underlying normative tensions in a country where egg freezing for social reasons is currently not allowed. The study adds new empirical insights to the ongoing debate by outlining and discussing viewpoints of those directly affected: women. Following up on the lay persons perspective is particularly important in the context of future biomedical innovations that may challenge established norms and create new tensions. It therefore also adds to the societal debate and supports evidence-informed policy making in that regard.

Preserving the option to conceive through egg freezing (oocyte cryopreservation) is surrounded by value conflicts and diverse viewpoints, particularly when non-medical or so-called ‘social’ reasons are involved. The debate is controversial and shaped by normative perceptions of the life course, including concepts regarding reproductive ageing, gender, motherhood and biomedicalization. To unravel the controversy and systematically identify the variety of viewpoints on egg freezing, a Q-methodology study was conducted in The Netherlands between December 2018 and October 2019. Thirty-four women of reproductive age participated in the study. They ranked 40 statements according to their level of agreement, and explained their ranking during follow-up interviews. Data were analysed using by-person factor analysis and interpreted using both quantitative and qualitative data. Four viewpoints, of which the fourth was bipolar, were identified: (1) cautious about egg freezing technology; (2) my body, my choice; (3) egg freezing is unnatural; and (4) have children and have them early. The distinct viewpoints illustrate different prioritizations of values and normative dimensions of biomedical innovations. By knowing more about the prevalent opinions on egg freezing and the surrounding controversy, policy makers and practitioners can make better informed decisions in terms of promoting and providing patient-centred infertility care. The findings furthermore stimulate continuing scholarly work on egg freezing and other innovations in reproductive medicine which may continue to disrupt normative standards.

Recent buzzes around big data, data science and artificial intelligence portray a data-driven future for healthcare. As a response, Europe's key players have stimulated the use of big data technologies to make healthcare more efficient and effective. Critical Data Studies and Science and Technology Studies have developed many concepts to reflect on such overly positive narratives and conduct critical policy evaluations. In this study, we argue that there is also much to be learned from studying how professionals in the healthcare field affectively engage with this strong European narrative in concrete big data projects. We followed twelve hospital-based big data pilots in eight European countries and interviewed 145 professionals (including legal, governance and ethical experts, healthcare staff and data scientists) between 2018 and 2020. In this study, we introduce the metaphor of dreams to describe how professionals link the big data promises to their own frustrations, ideas, values and experiences with healthcare. Our research answers the question: how do professionals in concrete data-driven initiatives affectively engage with European Union's data hopes in their ‘dreams’ – and with what consequences? We describe the dreams of being seen, of timeliness, of connectedness and of being in control. Each of these dreams emphasizes certain aspects of the grand narrative of big data in Europe, makes particular assumptions and has different consequences. We argue that including attention to these dreams in our work could help shine an additional critical light on the big data developments and stimulate the development of responsible data-driven healthcare.