Children's Experiences of Communication in Everyday Life Following Posterior Fossa Tumour Surgery-A Sense of...

Posterior fossa tumours (PFT) are the most common childhood brain tumours, and children treated for these tumours are at increased risk of persistent speech, language and/or communication difficulties. Such difficulties have often been described in association with the postoperative complication cerebellar mutism syndrome (CMS), but can also occur in children without a period of mutism. Speech and language difficulties may affect communication, participation and social relationships. However, little is known about how children themselves experience communication in everyday life following PFT surgery.

This study aimed to describe children's experiences of communication in their everyday lives following PFT surgery.

An inductive qualitative content analysis was conducted based on semi-structured interviews with 10 children, aged 6 to 18 years at the time of the interview, carried out at least 1 year after PFT surgery. Interviews were adapted to the children's communicative abilities, using augmentative and alternative communication (AAC) when needed, and a flexible, child-centred approach was used to capture their experiences.

Two overarching themes were identified: The theme A thin line between belonging and not belonging captured children's experiences of inclusion and exclusion through everyday communicative events; The theme Navigating reality towards normality captured how children expressed who they were and managed how they were perceived.

While speech, language and/or communication difficulties were not explicitly mentioned, the children's descriptions reflected how the consequences of such difficulties shaped everyday communication and participation. Small, everyday moments could affirm or undermine belonging, and familiar friendships provided continuity during a time of change. Children also expressed needs, set boundaries and protected their identity while adapting to new circumstances. The findings underline the importance of listening to children and planning support that is flexible, responsive and grounded in their perspectives.

What is already known on the subject Previous studies have described speech, language and/or communication difficulties following posterior fossa tumour surgery. In children with speech and language impairments, such difficulties have been linked to fewer peer interactions, social withdrawal and difficulties maintaining friendships and participating in group activities. What this paper adds to existing knowledge This study offers a unique insight into children's own experiences of communication after PFT surgery. These experiences have not previously been described from the children's perspective. The study captures how children experience everyday communication, showing how it can support or disrupt a sense of belonging depending on how communication unfolds in different contexts. What are the potential or actual clinical implications of this work? The findings of this study have implications for healthcare providers, school health services and educational settings. Professionals should not rely solely on observation but actively invite children to share their experiences. Supporting pre-existing friendships and informing classmates may contribute to more understanding and positive responses.