Center for Medical Ethics and Health Policy Staff Publications

Language

English

Publication Date

9-24-2024

Journal

Child Health Care

DOI

10.1080/02739615.2024.2403482

PMID

40857437

PMCID

PMC12270344

PubMedCentral® Posted Date

9-24-2025

PubMedCentral® Full Text Version

Author MSS

Abstract

Osteogenesis imperfecta (OI) is a rare genetic chronic condition leading to fragile bones and frequent bone fractures with wide-reaching health implications. Current literature suggests that children with chronic diseases face unique challenges at school, yet research regarding educational concerns among those with OI is limited. The present study involved qualitative analysis of semi-structured interviews with 10 children with OI and 12 caregivers of a child with OI. Children and caregivers participated in the interviews individually; they were not dyads of participants. Half of the caregivers who participated had OI themselves. The interviews were coded, and six themes were identified: (1) diverse school accommodations; (2) OI-related factors affecting children's academics; (3) OI-related physical differences regarding physical activities; (4) children's varying social dynamics; (5) variability in children's emotions with OI at school; and (6) psychosocial experiences of caregivers in their child's education. Findings suggest that OI has unique academic, social, physical, and emotional implications for children and their caregivers, and specific accommodations may be necessary to achieve academic success.

Keywords

osteogenesis imperfecta, children, education, patient perspectives, qualitative interviews

Published Open-Access

yes

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