The age range at diagnosis, complexity of the condition, and sensitive nature of the issues involved in a diagnosis of Turner syndrome (TS), present specific challenges for health professionals in sharing information. Little is known about the perceived information needs of girls with TS and their parents. A flexible qualitative design, guided by the principles of symbolic interactionism was employed in this exploratory study. This design enabled meanings girls and their parents attached to TS, how they interpreted, shared and valued information to be uncovered. A purposive sample of 15 families with daughters aged 9 to 16 years were recruited from a tertiary paediatric endocrinology clinic. Girls and parents participated in a total of 27 recorded semi-structured interviews. Data were analysed using the framework approach and the constant comparative method. Analysis revealed how girls and their parents interpreted and used information within the context of their everyday experiences of living with TS. Three activities were described by families: gathering and receiving, making sense of, and using and sharing information. Throughout these activities, themes of uncertainty, normalising and identity were present. A series of tensions described by the girls and their parents illustrated diverse approaches to the management of information. Meanings assigned to TS by girls and their parents influenced when, what and how information was shared with others. Despite a wealth of information, the girls and their parents described unfulfilled information needs. The interviews were dominated by discussion of the social implications of the condition and more specifically to social functioning, puberty and infertility. Parents were the primary source of information. These findings provide a basis for developing evidence based approaches to information sharing.
| Identifer | oai:union.ndltd.org:bl.uk/oai:ethos.bl.uk:647362 |
| Date | January 2013 |
| Creators | Collin, Jacqueline |
| Contributors | Clayton, Peter; Callery, Peter |
| Publisher | University of Manchester |
| Source Sets | Ethos UK |
| Detected Language | English |
| Type | Electronic Thesis or Dissertation |
| Source | https://www.research.manchester.ac.uk/portal/en/theses/the-perceived-information-needs-of-girls-with-turner-syndrome-and-their-parents(ea974e75-8cf0-436e-ac33-bb049ca584f3).html |
Page generated in 0.0022 seconds