Reproductive decision-making, parenthood and the use of assisted conception: an exploratory study of the perceptions and experiences of women with Turner Syndrome

This research examines the way Turner Syndrome (TS) influences reproductive decisions, focusing on the role of social imaginaries of motherhood, reproduction, family and responsibility in framing options and shaping choices. It looks at why it is so important to women with TS that they have a choice of family-building options, and how they understand and make sense of the potential risks of pregnancy. It explores the reception of new reproductive technologies such as maternal egg freezing (MEF), the reasons mothers may choose to freeze their eggs and the perception of its potential impact on family relationships. TS is a rare chromosome disorder affecting 1:2500 women, which usually causes infertility. While women can conceive using egg donation, most will face a high-risk pregnancy; little research explores how they evaluate the emotional and physical risks. Decisions taken in childhood can affect the reproductive choices available to a woman with TS in adulthood, but little is known about how mothers of girls with TS approach these decisions. Technologies such as MEF can be used as an analytical lens to examine women’s thinking on biological kinship, intrafamilial obligation, risk, choice and maternal duty. Using constructivist grounded theory, 30 photo-elicitation interviews were conducted with women with TS and mothers of girls with TS. The principles of Universal Design were used to plan for and accommodate the psychosocial aspects of TS that may affect an interview. Firstly, Kafer's (2013) concept of 'crip time' was applied in three ways, strange temporalities, imaginative live schedules and eccentric economic practices, showing how women with TS and mothers of girls with TS found ways to manage, circumvent and normalise the timing challenges of living with TS. The term 'courtesy mandated motherhood' describes the social pressure on mothers to plan for their daughter's reproductive future, using Kafer’s “curative imaginary” as an analogy for the pressure to take action to circumvent childlessness. This study conceptualises maternal egg freezing (MEF) as an eccentric economic practice which potentially enables women with TS to have a genetically related child. MEF could also act as a hope technology (Franklin, 1997) enabling mothers to give their daughter hope that she could become a mother. Secondly, Crossley’s (2007) concepts of ‘situated freedom’ and ‘genuine choice’ explored to what extent women with TS have agency in making reproductive choices. Participants valorised the possibility of having reproductive choices, seeing this as empowering as well as providing a woman with TS with ways to become a mother. Mothers used the availability of choices to support their daughters’ emotional management of infertility, extending the concept of psychological IVF (Adrian, 2015) to MEF, and to adoption as well as ARTs. Social imaginaries acted as models for responsible ways to manage disclosure and risk. Thirdly, this thesis shows how the practise of intensive mothering (Faircloth and Gurtin, 2017) affects expectations of maternal duty. A strong affinity can mean infertile women have family support to become mothers. However, most participants viewed intrafamilial donation as potentially disruptive to the social family, so preferred anonymous donation over a genetically-connected donor

From acceptance to adaptive acceptance of social media policy change: a set-theoretic analysis of B2B SMEs

Drawing on theories of mindfulness, this paper aims to introduce the concept of adaptive acceptance of social media policy change in the context of Business-to-Business (B2B) Small and Medium-sized Enterprises (SMEs) based in the South East of England. The paper adopts a quasi-experimental design based on the analysis of multiple cases with each case replicating prior findings either literally or theoretically. The study uses a mix of survey, interview, and electronic data informed by an innovative, set-theoretic approach to distill commonalities within positive cases and differences between positive and negative cases. It shows that attracting new customers and raising the company’s profile are necessary pre-requisites for adaptive acceptance of social media policy change. Furthermore, these two conditions combined with learning to use social media effortlessly are jointly sufficient for adaptive acceptance. Theoretical, practical, and methodological implications are discussed

The Lived Experience of Klinefelter Syndrome: A Narrative Review of the Literature

open access articl

Have you ever talked to any women with Turner Syndrome?’ Using Universal Design and photo elicitation interviews in research with women with mild cognitive impairment

A growing body of methodological research literature demonstrates the importance of adapting research design to address the specific needs of participants from minority groups (Humphries, 2017). The aim is to treat participants more respectfully during the research process, and to enhance participation, ensuring the findings more closely reflect participants' views and experience. However, there is an absence of work examining the needs of research participants with Turner Syndrome (TS), a chromosome disorder linked with mild cognitive impairment, and its potential impact on research interviews. This paper draws on a study of reproductive decision-making in women with Turner Syndrome and mothers of girls with TS in order to consider ways to improve research access and to make methodological adaptations for this group of participants. There is little qualitative research on the experience of living with Turner Syndrome (TS) or its associated experience of infertility. Most of the small number of studies that exist do not describe whether the research method was adapted to accommodate the psychosocial features of TS. Yet these features, which include social cognition issues and anxiety, may have an impact on women’s ability to participate fully in a research interview, and consequently on the quality of the data. This paper fills a gap in research describing the use of adaptions with women with TS, which may be of use to researchers and practitioners working with this group. It describes how a novel approach to research adaptations, Universal Design (UD), was used to identify and incorporate adaptions into the research design, both through the choice of photo elicitation interviews as a research method and through adjustments made at each stage of the research process. It discusses how adaptions worked to overcome barriers to participation and how effective this was, concluding with suggestions for applying this approach in future research

How to Create Accessible Online Survey Research

Although 20% of the population has a disability, adapting research to make it more accessible for disabled people is rarely covered in research skills training. This raises potential ethical and methodological issues with research, including the limitation that it restricts the available sample in terms of size and representativeness. This guide explains the importance of accessibility to social researchers and outlines some of the ways in which face to face research presents barriers to access. It goes on to describe how online survey research can remove or reduce some of those barriers. It gives specific examples of features to check when choosing an online survey tool, and adaptions and edits to make when designing an online survey. Finally, it describes how to check whether the surveys produced by three popular online survey tools will be (more) accessible

The impacts and implications of the community face mask use during the Covid‐19 pandemic: A qualitative narrative interview study

Abstract Introduction A range of nonpharmaceutical public health interventions has been introduced in many countries following the rapid spread of Covid‐19 since 2020, including recommendations or mandates for the use of face masks or coverings in the community. While the effectiveness of face masks in reducing Covid‐19 transmission has been extensively discussed, scant attention has been paid to the lived experience of those wearing face masks. Method Drawing on 40 narrative interviews with a purposive sample of people in the United Kingdom, with a particular focus on marginalised and minoritized groups, our paper explores experiences of face mask use during the pandemic. Results We find that face masks have a range of societal, health and safety impacts, and prompted positive and negative emotional responses for users. We map our findings onto Lorenc and Oliver's framework for intervention risks. We suggest that qualitative data offer particular insights into the experiences of public health interventions, allowing the potential downsides and risks of interventions to be more fully considered and informing public health policies that might avoid inadvertent harm, particularly towards marginalised groups. Patient or Public Contribution The study primarily involved members of the public in the conduct of the research, namely through participation in interviews (email and telephone). The conception for the study involved extensive discussions on social media with a range of people, and we received input and ideas from presentations we delivered on the preliminary analysis

The impacts and implications of the community face mask use during the Covid-19 pandemic: A qualitative narrative interview study.

INTRODUCTION: A range of nonpharmaceutical public health interventions has been introduced in many countries following the rapid spread of Covid-19 since 2020, including recommendations or mandates for the use of face masks or coverings in the community. While the effectiveness of face masks in reducing Covid-19 transmission has been extensively discussed, scant attention has been paid to the lived experience of those wearing face masks. METHOD: Drawing on 40 narrative interviews with a purposive sample of people in the United Kingdom, with a particular focus on marginalised and minoritized groups, our paper explores experiences of face mask use during the pandemic. RESULTS: We find that face masks have a range of societal, health and safety impacts, and prompted positive and negative emotional responses for users. We map our findings onto Lorenc and Oliver's framework for intervention risks. We suggest that qualitative data offer particular insights into the experiences of public health interventions, allowing the potential downsides and risks of interventions to be more fully considered and informing public health policies that might avoid inadvertent harm, particularly towards marginalised groups. PATIENT OR PUBLIC CONTRIBUTION: The study primarily involved members of the public in the conduct of the research, namely through participation in interviews (email and telephone). The conception for the study involved extensive discussions on social media with a range of people, and we received input and ideas from presentations we delivered on the preliminary analysis

Electoral Institutions and Electoral Violence in Sub-Saharan Africa

Political violence remains a pervasive feature of electoral dynamics in many countries in Sub-Saharan Africa, even where multiparty elections have become the dominant mode of regulating access to political power. With cross-national data on electoral violence in Sub-Saharan African elections between 1990 and 2010, this article develops and tests a theory that links the use of violent electoral tactics to the high stakes put in place by majoritarian electoral institutions. It is found that electoral violence is more likely in countries that employ majoritarian voting rules and elect fewer legislators from each district. Majoritarian institutions are, as predicted by theory, particularly likely to provoke violence where large ethno-political groups are excluded from power and significant economic inequalities exist