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.
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