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Children’s experiences of communication after posterior fossa tumour (PFT) surgery

Persson, Karin LU orcid ; Tiberg, Irén LU orcid ; Boeg Thomsen, Ditte LU ; Fyrberg, Å and Castor, Charlotte LU (2026) Posterior Fossa Society Meeting
Abstract
Children undergoing surgery for posterior fossa tumours (PFT) may experience postoperative language and communication difficulties, regardless of whether they develop cerebellar mutism syndrome (CMS) or not. While these language difficulties are increasingly recognised in current research, children’s own experiences of everyday communication remain limited. In this presentation, we share findings from a qualitative study that describes how children themselves experience communication in daily life following PFT surgery.
We used qualitative content analysis with an inductive approach. Semi-structured interviews were carried out with ten children aged 6–18 years, all of whom had speech, language and communication difficulties after... (More)
Children undergoing surgery for posterior fossa tumours (PFT) may experience postoperative language and communication difficulties, regardless of whether they develop cerebellar mutism syndrome (CMS) or not. While these language difficulties are increasingly recognised in current research, children’s own experiences of everyday communication remain limited. In this presentation, we share findings from a qualitative study that describes how children themselves experience communication in daily life following PFT surgery.
We used qualitative content analysis with an inductive approach. Semi-structured interviews were carried out with ten children aged 6–18 years, all of whom had speech, language and communication difficulties after surgery. The interviews were conducted individually and augmentative and alternative communication (AAC) used when needed. Two overarching themes emerged from the analysis. A thin line between belonging and not belonging illustrates how small, everyday communicative moments such as being invited, addressed, ignored or unheard influenced children’s sense of inclusion or exclusion. Navigating reality towards normality shows how children expressed needs, set boundaries, managed fatigue and protected their sense of self while also striving to be like others. Although children did not explicitly name their speech or language difficulties, their accounts clearly revealed the everyday consequences of such challenges, for example feeling unheard, social difficulties, fatigue and limits to participation. These experiences were influenced by relational and contextual factors, where supportive peers, family members and school environments could ease participation, while lack of understanding reinforced difficulties.
We discuss how these findings can guide more flexible and child-centred support that helps children participate in everyday life on their own terms, including subtle situations where a sense of inclusion may be experienced, and support children as they strive to be like others while still needing adjustments
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author
; ; ; and
organization
publishing date
type
Contribution to conference
publication status
published
subject
keywords
Speech, Language, Communication, Posterior fossa syndrome
conference name
Posterior Fossa Society Meeting
conference location
Copenhagen, Denmark
conference dates
2026-04-22 - 2026-04-24
language
English
LU publication?
yes
id
56f90f9d-3494-471d-96c5-227d5824594f
date added to LUP
2026-05-18 10:28:26
date last changed
2026-05-18 12:15:07
@misc{56f90f9d-3494-471d-96c5-227d5824594f,
  abstract     = {{Children undergoing surgery for posterior fossa tumours (PFT) may experience postoperative language and communication difficulties, regardless of whether they develop cerebellar mutism syndrome (CMS) or not. While these language difficulties are increasingly recognised in current research, children’s own experiences of everyday communication remain limited. In this presentation, we share findings from a qualitative study that describes how children themselves experience communication in daily life following PFT surgery.<br/>We used qualitative content analysis with an inductive approach. Semi-structured interviews were carried out with ten children aged 6–18 years, all of whom had speech, language and communication difficulties after surgery. The interviews were conducted individually and augmentative and alternative communication (AAC) used when needed. Two overarching themes emerged from the analysis. A thin line between belonging and not belonging illustrates how small, everyday communicative moments such as being invited, addressed, ignored or unheard influenced children’s sense of inclusion or exclusion. Navigating reality towards normality shows how children expressed needs, set boundaries, managed fatigue and protected their sense of self while also striving to be like others. Although children did not explicitly name their speech or language difficulties, their accounts clearly revealed the everyday consequences of such challenges, for example feeling unheard, social difficulties, fatigue and limits to participation. These experiences were influenced by relational and contextual factors, where supportive peers, family members and school environments could ease participation, while lack of understanding reinforced difficulties.<br/>We discuss how these findings can guide more flexible and child-centred support that helps children participate in everyday life on their own terms, including subtle situations where a sense of inclusion may be experienced, and support children as they strive to be like others while still needing adjustments<br/>}},
  author       = {{Persson, Karin and Tiberg, Irén and Boeg Thomsen, Ditte and Fyrberg, Å and Castor, Charlotte}},
  keywords     = {{Speech; Language; Communication; Posterior fossa syndrome}},
  language     = {{eng}},
  month        = {{04}},
  title        = {{Children’s experiences of communication after posterior fossa tumour (PFT) surgery}},
  url          = {{https://lup.lub.lu.se/search/files/250393043/Poster_KP.pdf}},
  year         = {{2026}},
}