Parents' experiences of children with a rare disease attending a mainstream school: Australia

To explore the perceptions of parents who had a child or adolescent (6-18 years) diagnosed with a rare disease who attended a mainstream school in Western Australia. Design and methods: A cross-sectional online survey was conducted with 41 parents of children with a rare disease.

Citation:
Foster M, Adama E, Arabiat D, Runions K, Vithiatharan R, Zyambo M, Lin A. Parents' experiences of children with a rare disease attending a mainstream school: Australia. J Pediatr Nurs. 2021.

Keywords:
Australia; Children; Education; Mental health; Parent-report; Rare diseases

Abstract:
To explore the perceptions of parents who had a child or adolescent (6-18 years) diagnosed with a rare disease who attended a mainstream school in Western Australia. Design and methods: A cross-sectional online survey was conducted with 41 parents of children with a rare disease.