O044 Families’ experiences navigating OSA care for children with craniofacial conditions

Abstract Introduction Children with craniofacial abnormalities (CFA) and skeletal dysplasia (SD) are at increased risk of obstructive sleep apnoea (OSA) due to complex anatomical and neuromuscular profiles. Although multidisciplinary medical management is recommended, the lived experience of navigating care for OSA in this population remains underexplored. This study explored how families experience and make sense of their child’s healthcare journey. Method Parents of children aged 10–19 (n = 13) with OSA and CFA and/or SD were recruited from a tertiary paediatric sleep service. Semi-structured interviews were conducted and analysed using reflexive thematic analysis. Result Four themes were developed. Families felt more confident and supported when healthcare professionals demonstrated clear, responsive, and respectful communication throughout their child’s OSA care. Consistent, coordinated care helped families feel understood and less overwhelmed by the healthcare system. Dismissive clinical interactions eroded trust, making families feel sidelined from decisions about their child’s OSA management. Finally, families described how healthcare environments, appointment systems, and medical equipment – like those related to CPAP – fail to accommodate the realities of caring for a child with CFA/SD and OSA, undermining treatment adherence and adding to practical and emotional strain. Discussion Although multidisciplinary OSA management is recommended for children with CFA/SD and OSA, families’ accounts highlight gaps in coordination, communication, and support. Despite high treatment burden and vulnerability in this group, families encountered structural and relational barriers to effective care. Practice improvements should include proactive communication, streamlined care across specialities, and greater sensitivity to psychosocial and logistical dimensions of managing OSA in CFA/SD.