Browsing by Author "Fearon, Kriss"

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    Experiences of face mask use during the COVID‐19 pandemic: A qualitative study
    (Wiley, 2022-08-30) Hanna, Esmee; Martin, Graham; Campbell, Anne; Connolly, Paris; Fearon, Kriss; Markham, Kriss
    The use of face masks and coverings has been a central component of efforts to mitigate the impact of the COVID-19 pandemic and has been legally mandated in some countries. Most academic studies to date, however, have focussed primarily on its effectiveness in reducing SARS-CoV-2 transmission, largely neglecting the social dimensions of mask mandates. In this narrative interview-based study, we consider experiences of face masks, with a particular focus on groups considered to be at a potential disadvantage from compulsory masking. Drawing on 40 telephone, video-call and e-mail interviews, we highlight the impact of inconsistent communication and the notion of mask wearing as an act of altruism on participants’ experiences. In particular, we show how intolerance towards individuals who did not wear masks could result in stigma and exclusion, regardless of the legitimacy of their reasons. We suggest that more is needed to mitigate the ‘dark side’ of discourses of collective effort and altruism at a time of societal stress and fracture, and to account for the needs and interests of groups for whom compulsory masking may result in further marginalisation.
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    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
    (SAGE, 2019) Fearon, Kriss
    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.
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    How to Create Accessible Online Survey Research
    (Sage, 2022-07-12) Aidley, Daniela; Fearon, Kriss
    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.
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    Infertility, reproductive timing and ‘cure’ in families affected by Turner Syndrome
    (Social Science & Medicine, 2023-06-02) Fearon, Kriss
    This article discusses the influence of a chromosome condition affecting women’s reproductive capacity, Turner Syndrome (TS), on affected women’s social timing, examining the strategic decisions that are made within families in relation to reproduction, to navigate these disruptions. Based on photo elicitation interviews with 19 women with TS and 11 mothers of girls with TS in the UK, it presents findings from an under-researched topic, TS and reproductive choices. In a social context where motherhood is not only desirable, but expected (Suppes, 2020), the social imaginary of infertility anticipates a future of unhappiness and rejection, an undesirable condition that should be avoided. Accordingly, mothers of girls with TS often expect that their daughter will want to have children. Infertility diagnosed in childhood has a distinctive impact on reproductive timing, as future options may be anticipated for years. This article uses the concept of ‘crip time’ (Kafer, 2013) to explore how women with TS and mothers of girls with TS experience temporal misfitting based on a childhood diagnosis of infertility, and manage, resist and re-frame this to minimise stigma. The ‘curative imaginary’ (Kafer, 2013), a social norm where disabled people are expected to desire a cure for their condition, is used as an analogy for infertility, describing how mothers of girls with TS respond to social pressure to plan for their daughter’s reproductive future. These findings may be useful both for families navigating childhood infertility and practitioners who support them. This article demonstrates the cross-disciplinary potential of applying disability studies concepts to the context of infertility and chronic illness, where concepts shed new light on the dimensions of timing and anticipation in this context, improving our understanding of the lived experience of women with TS, and how they view and use reproductive technologies.
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    The Lived Experience of Klinefelter Syndrome: A Narrative Review of the Literature
    (Frontiers Media SA, 2019) Cheetham, Tim; Fearon, Kriss; Herbrand, C.; Hudson, Nicky; McEleny, Kevin; Quinton, Richard; Stevenson, Eleanor; Wilkes, Scott; Hanna, Esmee
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    Oestrogen
    (Bloomsbury, 2024-04-07) Fearon, Kriss; Jones, Charlotte
    This chapter explores the conceptualisation of oestrogen ‘deficit’ for women with variations in sex characteristics (VSCs), and their relationship with the biomedical replacement therapies designed to supplement or restore their hormone levels (i.e. HRT). Low levels of oestrogen may be stigmatised when social norms are not fulfilled on time, or at all, meaning that some people repeatedly ‘misfit’ with the social timing of their peers throughout the life course. We explore how the medical interventions intended to remedy low oestrogen levels can also be stigmatising, and how stigmatisation may be resisted, examining the strategies deployed to achieve this, and the way this circumvents, negotiates and reframes a sense of (mis)fitting with social timing norms.
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    Reproductive decision-making, parenthood and the use of assisted conception: an exploratory study of the perceptions and experiences of women with Turner Syndrome
    (De Montfort University, 2020-01) Fearon, Kriss
    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.
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    The impacts and implications of the community face mask use during the Covid‐19 pandemic: A qualitative narrative interview study
    (Wiley, 2023-03-21) Hanna, Esmee; Martin, Graham; Campbell, Anne; Connolly, Paris; Fearon, Kriss
    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.
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    Waterbirth: a national retrospective cohort study of factors associated with its use among women in England
    (BMC Pregnancy and Childbirth, 2021-03-26) Aughey, H.; Jardine, J.; Moitt, N.; Fearon, Kriss; Jawdon, J.; Pasupathy, D.; Urganci, I.; NMPA Project Team; Harris, Tina
    Background Waterbirth is widely available in English maternity settings for women who are not at increased risk of complications during labour. Immersion in water during labour is associated with a number of maternal benefits. However for birth in water the situation is less clear, with conclusive evidence on safety lacking and little known about the characteristics of women who give birth in water. This retrospective cohort study uses electronic data routinely collected in the course of maternity care in England in 2015–16 to describe the proportion of births recorded as having occurred in water, the characteristics of women who experienced waterbirth and the odds of key maternal and neonatal complications associated with giving birth in water. Methods Data were obtained from three population level electronic datasets linked together for the purposes of a national audit of maternity care. The study cohort included women who had no risk factors requiring them to give birth in an obstetric unit according to national guidelines. Multivariate logistic regression models were used to examine maternal (postpartum haemorrhage of 1500mls or more, obstetric anal sphincter injury (OASI)) and neonatal (Apgar score less than 7, neonatal unit admission) outcomes associated with waterbirth. Results 46,088 low and intermediate risk singleton term spontaneous vaginal births in 35 NHS Trusts in England were included in the analysis cohort. Of these 6264 (13.6%) were recorded as having occurred in water. Waterbirth was more likely in older women up to the age of 40 (adjusted odds ratio (adjOR) for age group 35–39 1.27, 95% confidence interval (1.15,1.41)) and less common in women under 25 (adjOR 18–24 0.76 (0.70, 0.82)), those of higher parity (parity ≥3 adjOR 0.56 (0.47,0.66)) or who were obese (BMI 30–34.9 adjOR 0.77 (0.70,0.85)). Waterbirth was also less likely in black (adjOR 0.42 (0.36, 0.51)) and Asian (adjOR 0.26 (0.23,0.30)) women and in those from areas of increased socioeconomic deprivation (most affluent versus least affluent areas adjOR 0.47 (0.43, 0.52)). There was no association between delivery in water and low Apgar score (adjOR 0.95 (0.66,1.36)) or incidence of OASI (adjOR 1.00 (0.86,1.16)). There was an association between waterbirth and reduced incidence of postpartum haemorrhage (adjOR 0.68 (0.51,0.90)) and neonatal unit admission (adjOR 0.65 (0.53,0.78)). Conclusions In this large observational cohort study, there was no association between waterbirth and specific adverse outcomes for either the mother or the baby. There was evidence that white women from higher socioeconomic backgrounds were more likely to be recorded as giving birth in water. Maternity services should focus on ensuring equitable access to waterbirth.
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    What do families affected by Turner Syndrome think of ovarian tissue freezing in childhood?
    (Taylor and Francis, 2023-04-27) Fearon, Kriss
    Ovarian tissue freezing (OTF), currently used to preserve fertility for girls and women with cancer, is beginning to be considered for conditions that cause ovarian insufficiency in childhood, such as Turner Syndrome (TS). This article addresses the gap in information on how women with TS and their families view OTF and the values that inform the decision to use it. It reports qualitative findings on the perceived benefits and challenges of OTF, using a purposive sample of 19 women with TS and 11 mothers of girls with TS in the UK, taken from a wider study on how reproductive choices are shaped by TS. It concludes by looking at ways to address the potential use of OTF with families. Most participants strongly supported the option of OTF. Perceived benefits included the potential for natural conception and a genetically-related child, and increasing the agency of women with TS. Perceived challenges included the invasive nature of tissue collection, the age it would need to be performed, and how girls and their family would be informed and supported. Some participants also identified the impact on a girl’s future fertility and the possibility that TS is heritable as barriers.