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.

Supporting the Social-Emotional Well-Being of Elementary School Students Who Are Deaf and Hard of Hearing: A Pilot Study.

PURPOSE: Children who are Deaf and Hard of Hearing (DHH), their parents, Teachers of the Deaf, and other community stakeholders were involved in co-designing a web-based resource to support students' social-emotional well-being. The resource was designed to provide families and teachers with strategies to enhance the social and emotional well-being of Grade 4-6 students who are DHH. This study reports outcomes of a pilot study of the web-based resource intervention. METHOD: A pre-post pilot study was conducted to quantitatively examine reported anxiety, well-being, social relationships, school experience, student-teacher relationship, and parent and teacher self-efficacy. A total of 37 students, their parents (n = 37), and their classroom teachers (n = 40) participated in the intervention program and were provided access to the resource. RESULTS: In total, 19 students, 22 parents, and 17 teachers completed both pre- and postsurvey measures. Paired t tests revealed that there was a statistically significant increase in parents' self-efficacy scores from pre- to posttest. Multivariate analysis of covariance revealed a significant association between parent use of the website and student-reported improved peer support and reduced school loneliness. No other statistically significant differences were found. CONCLUSIONS: The use of a web-based resource codeveloped with students who are DHH, their parents, and teachers could potentially be beneficial for the well-being of students who are DHH as well as parents' self-efficacy. Further research is needed to confirm the benefits.