O2118: Exploring School Experiences in Children Affected by Osteogenesis Imperfecta

Background: Osteogenesis imperfecta (OI) is a rare genetic condition characterized by fragile bones and frequent fractures, posing broad health implications. In general, children with chronic disabilities experience negative social experiences at school. Without support, children with chronic illnesses have an increased risk of social isolation, negative self-talk, anxiety, and depression. Children with chronic diseases also experience diverse academic challenges due to their conditions and treatments, including decreased academic performance and lower graduation rates, which may in turn affect future higher education or employment opportunities. Despite the acknowledged struggles of children with chronic illnesses, limited research addresses similar educational concerns for children with OI. This project aimed to assess educational challenges faced by children with OI and their caregivers. Objectives included understanding (1) available school accommodations; (2) academic, social, emotional, and physical experiences; and (3) caregivers’ roles and emotions regarding sending their child with OI to school.

Methods: Semi-structured interviews explored OI characteristics, pain challenges, mental health issues, and intervention priorities for the OI community. Interviews were transcribed and coded using Thematic Content Analysis. Relevant quote abstraction and thematic analysis identified significant themes in participants' interviews, focusing on social and academic factors impacting children with OI in schools. Thematic frequencies were calculated to identify prominent educational themes.

Results: Following qualitative analysis, six themes regarding accommodations, academics, physical limitations, social experiences, emotions, and caregivers’ psychosocial responses were identified. Various academic and physical accommodations are offered for children with OI (18/22), with satisfaction levels differing among participants regarding their quality, effectiveness, and extent. Next, OI-related factors influence children’s academic performance, with participants recounting a range of positive (6/22) and negative (10/22) experiences. Additionally, OI-related physical distinctions shape how children participate in physical education (9/22), recess and playground activities (7/22). Social interactions with peers are similarly impacted by children’s OI status, yielding both positive (9/22) and negative (15/22) outcomes. The management of emotions in classroom settings is also influenced by OI status, with both positive (7/22) and negative (14/22) effects observed. Lastly, children’s educational experiences with OI affect their caregivers’ psychosocial experiences and roles (12/22).

Conclusion: OI has distinctive academic, social, physical, and emotional implications, necessitating specific accommodations for educational success. School personnel need to understand the unique physical challenges associated with OI. Creating resources easily accessible to educators can empower them to better support children with OI. Programs promoting emotional well-being, self-esteem, and coping mechanisms should be integrated into the school curriculum. Healthcare providers should proactively initiate meaningful discussions with caregivers well in advance of their children's transition to kindergarten. Overall, physicians should actively collaborate with educational professionals to foster a supportive school environment for these children and their families, and this study highlights the intersection of healthcare and education in a specific patient population.