Parent/ guardian perspectives of play experience for under 5's with OI
Research type
Research Study
Full title
A qualitative investigation using semi structured interviews to explore parental and guardian perceptions of the play experience of children under the age of 5 years, with a clinical or genetic diagnosis of severe osteogenesis imperfecta, and who are in recite of care from the children’s bone service at Sheffield Children’s NHS Foundation Trust.
IRAS ID
360027
Contact name
Caroline Marr
Contact email
Sponsor organisation
Sheffield Children's NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Osteogenesis Imperfecta (OI) is a rare genetic disorder characterised by fragile bones, limb deformities, and short stature. Diagnosis can be clinical or genetic, with significant variability in both genetic causes and presentation. OI is typically classified as mild, moderate, or severe, with the most severe forms having the greatest impact on quality of life (QoL), developmental milestones, social interactions, and overall well-being.
Play is essential for child development, supporting physical, social, emotional, and cognitive growth. It improves coordination, school readiness, and mental health. However, children with physical disabilities, including OI, often face barriers to play. While research has explored general access to play for children with disabilities, no studies have specifically focused on preschool-aged children with severe OI. To assess whether this was an area of concern, the researchers conducted a Patient and Public Involvement and Engagement (PPIE) session to explore this subject. The PPIE session showed that parents and guardians do feel that play opportunities were not equitable for their child with OI, reporting significant challenges in establishing safe and accessible play. Their insights highlighted the need for research to identify targeted support strategies that enable meaningful and safe play experiences for children with severe OI.
Funding from the Brittle Bone Society was gained for a clinical study to investigate play experiences in children under five years with severe OI. The research will explore how these children engage in play, the role of parents and caregivers, and the barriers they encounter. Findings from this study could inform the development of safe, accessible toys and play resources, ultimately enhancing play opportunities, supporting early childhood development, and improving QoL for children with severe OI.
REC name
London - Stanmore Research Ethics Committee
REC reference
26/LO/0060
Date of REC Opinion
19 Mar 2026
REC opinion
Further Information Favourable Opinion