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1.
Soc Sci Med ; 328: 116005, 2023 07.
Article in English | MEDLINE | ID: mdl-37295207

ABSTRACT

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.


Subject(s)
Infertility , Turner Syndrome , Child , Female , Humans , Turner Syndrome/complications , Turner Syndrome/genetics , Infertility/therapy , Reproduction , Mothers , Interpersonal Relations
2.
Hum Fertil (Camb) ; 26(2): 355-364, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37102583

ABSTRACT

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.


Subject(s)
Fertility Preservation , Primary Ovarian Insufficiency , Turner Syndrome , Child , Female , Humans , Turner Syndrome/complications , Cryopreservation , Freezing
3.
Sociol Health Illn ; 44(9): 1481-1499, 2022 11.
Article in English | MEDLINE | ID: mdl-36040759

ABSTRACT

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.


Subject(s)
COVID-19 , Masks , Humans , Pandemics/prevention & control , SARS-CoV-2 , Qualitative Research
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