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

PURPOSE: 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. Here we report the findings of 14 open-ended questions on their experience of illness-related factors and impact on school-related social activities, such as sports, school camps and leadership roles whilst their child with a rare disease attended a mainstream school in Australia. Responses were analysed using an inductive thematic content approach. RESULTS: We identified three themes (resources, experiences and needs), seven categories (illness, support, knowledge, acceptance, isolation, activities of daily living and adjunctive therapy) and 24 codes from the parents' responses describing the experiences of their child at school. Parents want the government and educational systems to provide the necessary funding and resources to reflect an inclusive curricula and supportive environment that can meet the learning needs of children with a rare disease at a mainstream school. CONCLUSIONS: Further research, policy development and interventions are needed to explore how schools can meet the diverse psychosocial physical and emotional needs of children diagnosed with a rare disease who attend a mainstream school in Australia. PRACTICE IMPLICATIONS: A child needs to be viewed from a holistic ecological viewpoint; future research with larger representative samples to explore rare disease experiences and a critical review of existing legislation, interventions and initiatives is required.