Between Anxiety and Adaptation: Children's and Parents' Experiences with Botulinum Toxin Treatment in Cerebral Palsy.

Background/

Objectives

This study explores how children with cerebral palsy (CP) and their parents experience botulinum toxin type A (BoNT-A) treatment, focusing on emotional and procedural challenges and communication within the triad of children, parents, and healthcare providers.

Methods

This qualitative sub-study was conducted within the WE-study, a randomized controlled trial on BoNT-A effects in children with CP. Semi-structured interviews with 20 parents and 18 children (aged 4-15 years, GMFCS I-II) were thematically analyzed.

Results

Three themes were identified: Preparing for the treatment, Being in the moment, and Adapting after treatment. Pre-procedural anxiety was common, with children describing nervousness or physical discomfort in the days before the treatment. During the procedure, pain management and sedation choices influenced children's experiences, with healthcare providers being the primary source of information. After treatment, some children experienced temporary walking instability, but most quickly resumed daily activities. Communication primarily occurred between healthcare providers and each party individually, rather than through a triadic interaction.

Conclusions

BoNT-A treatment involves both emotional distress and adaptation. Strengthening child-inclusive communication, structured preparation, and collaboration within the triad may improve treatment experiences and better align care with child-centered principles. Future research should explore strategies to enhance child involvement in repeated treatments.