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Title: The role of experiential knowledge of fragile X syndrome in the provision of information about prenatal testing
Author: Grant, Hilary Louise
Awarding Body: University of Leeds
Current Institution: University of Leeds
Date of Award: 2012
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Background In the UK, prenatal diagnostic testing for Fragile X Syndrome (FRAX), the leading genetic cause of learning disability, is offered only to women with affected relatives. Policy requirements for accurate and balanced information about conditions tested for are difficult to fulfil. Research suggests that parents value experiential knowledge of conditions when considering testing choices. Aims and objectives This study sought to identify the type of information that would be prioritised to assist informed choice about prenatal diagnostic testing for FRAX. Methods and participants First, 13 parents were interviewed to explore different perspectives on the impact of FRAX on their affected child and quality of life. Thematic analysis informed the main phase of research, a Q-Methodology study of diversity in viewpoints about the aspects of the condition to be privileged in prenatal testing information. The Q study involved twenty seven parents and seven health professionals, who sorted statements about FRAX and quality of life. Results Factor analysis identified three independent viewpoints on information which emphasised: the normality of life with a child with FRAX; FRAX as a tragedy for a family and the social and economic challenges experienced in having a child with FRAX.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available