title: 'They did not have a word': the parental quest to locate a 'true sex' for their intersex children.
abstract: Given the paucity of research in this area, the primary aim of this study was to explore how parents of infants with unclear sex at birth made sense of 'intersex'. Qualitative methods were used (semi-structured interviews, interpretative phenomenological analysis) with 10 parents to generate pertinent themes and provide ideas for further research. Our analysis highlights the fundamental shock engendered by the uncertain sex status of children, and documents parental struggles to negotiate a coherent sex identity for their children. Findings are discussed in light of the rigid two-sex system which pervades medicine and everyday life, and we argue that greater understanding of the complexity of sex and gender is required in order to facilitate better service provision and, ultimately, greater informed consent and parental participation regarding decisions about their children's status.
authors.affiliation: a Institute of Psychological Sciences, University of Leeds , UK.
authors.forename: Brendan
authors.initials: B
authors.lastname: Gough
authors.forename: Nicky
authors.initials: N
authors.lastname: Weyman
authors.forename: Julie
authors.initials: J
authors.lastname: Alderson
authors.forename: Gary
authors.initials: G
authors.lastname: Butler
authors.forename: Mandy
authors.initials: M
authors.lastname: Stoner
mesh_terms: D003142:Communication; D003220:Conflict, Psychological; D012734:Disorders of Sex Development / Q000175:diagnosis / Q000523:psychology*; D005260:Female; D005783:Gender Identity; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D010290:Parents / Q000523:psychology*; D011369:Professional-Patient Relations; D036301:Qualitative Research
keywords: Intersex; ambiguous genitalia; gender; parents; qualitative