Nguyen Linda, Di Rezze Briano, Mesterman Ronit, Rosenbaum Peter, Gorter Jan Willem
1 CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada.
J Child Neurol. 2018 Oct;33(11):724-733. doi: 10.1177/0883073818786567. Epub 2018 Jul 24.
Children and adolescents with cerebral palsy often receive botulinum toxin A (BoNT-A) to manage hypertonia. This qualitative study aimed to describe and categorize BoNT-A effects that parents observed using the WHO's International Classification of Functioning, Disability and Health (ICF) framework. An interpretive description methodology was used; semi-structured interviews were conducted with 15 parents of nonambulatory young people with cerebral palsy (mean age 10.2 years, SD 3.9, 7 males) who received BoNT-A. Parents reported BoNT-A effects on each ICF category. Through interpretive description, an overall theme emerged: "finding the right path to do what is best." Five subthemes included (1) Parents' hopes, (2) Parents' goals for their child, (3) Parents' learning what works, (4) Parents' reflections, and (5) Parents' destination. This study provides insights into parents' journeys of how they learned about BoNT-A effects in their child, which helped them to identify goals for future treatment.
患有脑瘫的儿童和青少年经常接受A型肉毒杆菌毒素（BoNT-A）来治疗肌张力亢进。这项定性研究旨在使用世界卫生组织的《国际功能、残疾和健康分类》（ICF）框架，对家长观察到的BoNT-A的效果进行描述和分类。采用了解释性描述方法；对15名接受BoNT-A治疗的非行走型脑瘫青少年（平均年龄10.2岁，标准差3.9，7名男性）的家长进行了半结构化访谈。家长们报告了BoNT-A对ICF每个类别的影响。通过解释性描述，出现了一个总体主题：“找到做最好之事的正确道路”。五个子主题包括：（1）家长的希望，（2）家长对孩子的目标，（3）家长了解有效的方法，（4）家长的反思，以及（5）家长的目标。这项研究深入了解了家长们了解孩子身上BoNT-A效果的过程，这有助于他们确定未来治疗的目标。
