Endocrine Abstracts

Introduction: The age range at diagnosis, complexity of the syndrome and the sensitive and emotional nature of the issues involved in a diagnosis of Turner Syndrome (TS) present specific challenges for health professionals in sharing information with girls and their families. However little is known about the perceived information needs of parents and there has been no study of the views of girls with TS.

Methods: A qualitative design was employed to explore the experiences of girls with TS and their parents. A purposive sample of 15 families with daughters aged 9–16 years were recruited from a Growth Clinic in a Tertiary Paediatric Endocrinology Clinic. Girls and parents participated in a total of 27 semi-structured interviews. Participants were encouraged to identify issues of most importance to them and interviews were conducted informally in the participant’s home. Interviews were recorded with permission and transcribed. Data were analysed using the Framework Approach of the National Centre for Social Research.

Findings and conclusion: The need for and understanding of information varied across families and between individual family members. Three dimensions described by families in their quest for information included gathering and receiving information, making sense of information and using and sharing information. Across these domains parents described the difficulty of distinguishing between their daughters’ ‘normal’ personalities and presenting features of TS, whether social, cognitive or physical. Parents’ key tension was between viewing their daughters as ‘normal’ and recognising and adapting to problems associated with TS. This tension influenced with whom, when, what and how information was shared between health professionals, parents and girls. These findings provide a basis for developing evidence based approaches to information sharing.