Pros and cons of botulinum toxin injection therapy in cerebral palsy: A qualitative study exploring caregivers' perspective

Abstract

Background To describe and understand the experiences and beliefs of caregivers of children with cerebral palsy following botulinum toxin injection. Methods A descriptive case study approach with focus group interviews was employed. A semi‐structured questionnaire was conducted to collect data. Twenty‐one caregivers of children (3–13 years old) with cerebral palsy were recruited with a maximum variation sampling strategy to gain insight through different perspectives. Qualitative analysis with verbatim transcripts was analysed using a thematic approach. Findings Four themes emerged from qualitative analyses: acceptance of diagnosis, perceptions about treatment, caregivers' experiences with the health environment, and feelings and thoughts after the treatment. Conclusions This study highlights caregivers' requests for information about the possible long‐term effect of botulinum toxin, as well as information and support to provide the best rehabilitation programme immediately after injection.

Correspondence between Expected, Perceived, and Measured Effects of BoNT-A Treatment in Calf Muscles among Children and Adolescents with Cerebral Palsy: A Mixed Methods Study

“…Caregivers have reported positive effects, including reduced spasticity, improved motor function, increased happiness, and activity levels in their children [ 24 ]. It is important to note that caregivers also mentioned both benefits and drawbacks associated with the treatment [ 24 , 25 , 26 ]. Notably, previous studies have predominantly involved caregivers, but there is increasing interest in recent years to include children themselves in research.…”

Real-world experience of OnabotulinumtoxinA treatment in female patients with chronic migraine: a qualitative study using in-depth interviews

“…It is particularly beneficial for describing complex phenomena such as individual health-related behaviors, considering their beliefs, values, and motivations [ 26 , 27 ]. Qualitative studies have already been used to analyze patients’ experiences with OBT-A therapy in other neurological disorders such as poststroke spasticity [ 28–30 ], cerebral palsy [ 31 , 32 ], oromandibular dystonia [ 33 ], and spasmodic dysphonia [ 34 ]. In contrast, the evidence regarding female patients’ experiences with CM on treatment with OBT-A is scarce.…”