Living with Turner Syndrome : the challenges and experiences of chronic ill health, body-image and infertility
Year: 2005
Type: dissertation
Abstract: Turner Syndrome (TS) is a sex-chromosome disorder occurring in approximately 1 in\n2,500 female births. The main features are short stature and dysfunctional gonads,\nresulting in a lack of sex hormones, delayed puberty and infertility. Physical\ncharacteristics associated with TS include webbed neck and pigmented moles.\nWomen with TS have a high risk of developing chronic ill health and require ongoing\nmedical monitoring. This qualitative study aims to develop an understanding of the\npsychosocial impact of living with TS during adulthood, with particular reference to\nchronic ill health, body-image and infertility. Ten women were interviewed and data\nwere analysed using Interpretative Phenomenological Analysis. Two superordinate\nthemes were developed: 'Living with an Evolving Condition' and 'Oscillating\nbetween a Positive and Negative Identity'. The meaning of TS changed for\nparticipants depending on their life stage and they described living with uncertainty\nand difficulty in differentiating themselves from the manifestations of TS. Various\nconsequences of TS impacted upon participants' struggles to establish a coherent and\npositive identity, including dissatisfaction with their appearance, receiving differential\ntreatment and their medical care. Infertility was a particularly important aspect of\nparticipants' experiences of TS across the life stage and challenged their\nestablishment of a positive identity. A limited version of Foucauldian Discourse\nAnalysis was adopted to understand the influence of the socio-cultural (pronatalist)\ncontext on being infertile and provided a 'material-discursive' approach to the\nexperience of infertility. Participants' struggles to maintain a positive identity were\nrelated to a lack of available, positive discursive resources to define themselves as\n(infertile) women. The participants also constructed their infertility as a 'dis-ability'\nand a 'reproductive impairment', placing them in positions of deficit and dysfunction.\nPotential clinical implications are discussed.
Author: Jane C Pellatt
Language: English
Subfield: Genetics
Domain: Life Sciences
Open Access status: green
OpenAlex ID: W764332234