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. / Thesis / Master of Science (MSc) / Children diagnosed with cerebral palsy (CP) receive botulinum toxin (BoNT-A) as a treatment to
reduce muscle tone. Current research on the use of BoNT-A injections in non-ambulatory
children with CP is scarce and may not incorporate the perspectives of the family about their
goals for treatment. This study interviewed parents to ask about the effects that they observed in their child after BoNT-A treatment. Fifteen parents were interviewed and all parents spoke about their journey of “finding the right path to do what is best for my child” as they learned about the possible effects of BoNT-A treatment for their child. By learning about parents’ journey, informational resources can be developed and shared with other parents about the effects of BoNT-A treatment. It is important to help parents understand these effects, which would allow them to discuss and identify appropriate goals with healthcare professionals in future BoNT-A treatment sessions.
| Identifer | oai:union.ndltd.org:mcmaster.ca/oai:macsphere.mcmaster.ca:11375/22278 |
| Date | January 2017 |
| Creators | Nguyen, Linda |
| Contributors | Gorter, Jan Willem, Rehabilitation Science |
| Source Sets | McMaster University |
| Language | English |
| Detected Language | English |
| Type | Thesis |
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