Endocrine Abstracts

Aim: To explore the role of paediatric endocrine nurse specialists in supporting information needs of girls with TS and their parents.

Methods: A purposive sample of 15 families with daughters aged 9–16 years were recruited from a tertiary paediatric growth clinic to participate in an exploratory qualitative study. 27 semi-structured interviews were recorded. Data were analysed using the framework approach and 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.

Findings: Commencement of GH treatment was the point at which girls and their parents stated they met the nurse specialist. Parents of children with other lifelong conditions are reported in the literature as being introduced to clinical nurse specialists at the initial diagnosis. However the majority of the girls interviewed did not fit a clinical picture of daily threats of physical crises. Their orientation to physical wellness meant that some parents and girls did not easily perceive themselves as a patient or recognise the need for a nurse. With the exception of infertility, there was limited reference by parents or girls to long-term health implications of TS. Parents and girls valued the input from paediatric endocrine nurse specialists commenting favourably on their personal qualities. However, they described their relationship with them as specific and transient. The lifelong nature of TS requires an educational approach that incorporates ongoing assessment of understanding of TS including future health implications.

Conclusion: The role of the paediatric endocrine nurse specialist did not reflect patterns of engagement with these girls and their parents that are reported in other clinical nurse specialist roles. Further research to determine how paediatric endocrine nurse specialists work in different tertiary centres is worthy of further detailed exploration.