Effects of Botulinum Toxin Treatment in Non-ambulatory Children and Adolescents with Cerebral Palsy: Understanding Parents’ Perspectives

Abstract

Children and adolescents with cerebral palsy (CP) often receive botulinum toxin (BoNT-A) to manage spasticity. Our 2014 study developed an inventory of parents’ goals for BoNT-A treatment, but reasons for selecting these goals were unclear. The current study aimed to describe and categorize the effects of BoNT-A that parents observed according to WHO’s International Classification of Functioning, Disability and Health (ICF) framework. This qualitative study used interpretive description. Fifteen parents of non-ambulatory young people with CP (mean age 10.2 years, SD 3.9, 7 males) who received BoNT-A were recruited through McMaster Children’s Hospital’s Spasticity Management Clinic. Interviews were conducted in-person or by telephone for 20-60 minutes. The research team read the initial transcript, identified codes, and finalized the coding framework. Member checking was conducted to enhance trustworthiness. The key theme was that parents needed to find the right path to do what is best for their child. Parents described how they learned about both positive and negative effects of BoNT-A treatment: some parents emphasized the child’s pain during BoNT-A injections (negative), but also felt that BoNT-A was helpful for their child (positive). Most effects of BoNT-A were coded at the ICF activity level, such as dressing These observations helped inform parents’ decision to continue with BoNT-A and identify future goals. This study provides insight into parents’ journey of learning about BoNT-A and goal-setting for their child. Parents’ perspectives will be used to refine the 2014 inventory of goals to facilitate collaborative goal-setting for BoNT-A treatment.