Barbara Barter1, Richard Patrick Hastings2, Rebecca Williams3,4, Jaci C Huws5. 1. Mental Health in Learning Disability, South London and Maudsley, NHS Foundation Trust, SE5 8AZ, London, UK. 2. Cerebra Chair of Family Research, CEDAR (Centre for Educational Development Appraisal and Research), University of Warwick, Coventry, CV4 7AL, UK. 3. Uwch Seicolegydd Ymgynghoro, University Health Board, North Wales, UK. 4. Gwasanaethau Arbennigol Plant, Bwrdd Iechyd Prifysgol, Betsi Cadwaladr, University Health Board, North Wales, UK. 5. School of Healthcare Sciences, Prifysgol Bangor University, North Wales, UK.
Abstract
BACKGROUND: The perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing. METHOD: Eight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing. RESULTS: Interpretative phenomenological analysis revealed two major themes with subthemes: (1) a devalued condition and a valued life and (2) a question of 'want?' Foucauldian discourse analysis highlighted two main discursive practices: (i) social deviance and (ii) tragedy and catastrophe of the birth of a baby with Down syndrome. CONCLUSIONS: The findings suggest that individuals with intellectual disabilities can make a valuable contribution to discussions surrounding the use of prenatal testing. Implications for clinical practice include the use of information about Down syndrome given to prospective parents, and the possible psychological impact of prenatal testing practices on individuals with Down syndrome.
BACKGROUND: The perceptions of individuals with Down syndrome are conspicuously absent in discussions about the use of prenatal testing. METHOD: Eight individuals with Down syndrome were interviewed about their views and experience of the topic of prenatal testing. RESULTS: Interpretative phenomenological analysis revealed two major themes with subthemes: (1) a devalued condition and a valued life and (2) a question of 'want?' Foucauldian discourse analysis highlighted two main discursive practices: (i) social deviance and (ii) tragedy and catastrophe of the birth of a baby with Down syndrome. CONCLUSIONS: The findings suggest that individuals with intellectual disabilities can make a valuable contribution to discussions surrounding the use of prenatal testing. Implications for clinical practice include the use of information about Down syndrome given to prospective parents, and the possible psychological impact of prenatal testing practices on individuals with Down syndrome.