"I have to be my child's voice": parents' experiences of continuity of care in cleft speech services.

Abstract

Continuity of care is critical for children with cleft palates who require coordinated speech-language pathology input across specialist cleft and community services over time. This study explored parents' experiences of continuity of care in cleft speech services, focusing on their interactions with the cleft team and community speech-language pathologists. Thirteen parents of children with cleft palate (aged 1-12 years) from Australia and New Zealand participated in semi-structured interviews. Five global themes and 15 subthemes were developed. The global themes were (1) relationships matter, (2) navigating a long and overwhelming journey, (3) communication that connects (or disconnects) care, (4) shared goals and different roles, and (5) barriers and solutions. Parents valued trusting relationships, accessible information, and coordinated management across services. However, limited three-way collaboration, inconsistent communication, and restricted access to cleft team SLPs left many parents acting as intermediaries between professionals. Parents identified early collaboration, accessible information, and clearer communication pathways as key enablers of continuity. Effective continuity of care relies on systems and relationships that are coordinated, transparent, and inclusive of families. Strengthening shared communication pathways and co-facilitative models of care could reduce the burden currently carried by parents and enhance cohesion for children with cleft palates.