Co-creation at hand: The road to independence

Bimanual performance is a prerequisite for independence, participation, and quality of life of young children with Cerebral Palsy (CP). The efficacy of intensive therapy programs aimed at improving motor performance in these children has been abundantly shown. Recent reviews on efficacy of these programs conclude that 3 elements are crucial: high intensity of practice, task-specificity and bimanual training. A next step in rehabilitation practice is the continuation of practice to the child’s daily life situations outside the clinic, such that retention of the established training effects can be established and healthcare independence of the parents and child is further promoted. This poses a tremendous challenge for both the parents and their child. Existing home-based programs that predominantly use explicit motor learning were shown to lead to increased stress in parents and reduced compliance in children to adhere to the intensive program that involves repetitive practice. Importantly, converging evidence from basic motor learning research showed that implicit motor learning is very effective in children with motor disorders. Crucially, implicit motor learning is more closely tailored to characteristics of these children compared to explicit learning. It places less demands on working memory and IQ which are often impaired in children with CP, it has positive effects on motivation and self efficacy, and it can be used in a play-setting, in turn reducing the burden on parents to continuously prompt their child. Surprisingly, these established and promising advantages of implicit learning for home-based practice in these children have not been systematically applied in rehabilitation, nor are results from such rehabilitation protocols investigated yet. In the present study we will develop and test 2 home-based protocols, one based on explicit learning and one based on implicit learning, aimed at improving bimanual performance of the young child with CP. Based on knowledge from inpatient therapy programs, we will use the same intensity of bimanual training of meaningful task-specific goals in both protocols. However, they differ in one important fundamental aspect, the way in which the practice is structured, either through an internal focus of attention (explicit: instructions on how to perform the tasks) or an external focus of attention (implicit: in a play setting using appropriate toys). The efficacy of both home-based protocols and a therapy-as-usual protocol (=control) will be compared in a 3-armed Randomized Controlled Trial in young children (18 months - 8 yr) with unilateral spastic CP. Primary outcome measures are focused on the child (bimanual performance; AHA) and the parents (parental stress; NOSI). Secondary outcome measures are directed at participation in playful activities at home and in school, and empowerment of the parents. Since home-based training is a multi-factorial process, it is highly unlikely that a ‘one-size-fits-all’ program exists. Therefore, critical mediating factors for its success will also be analyzed. Mediating factors at the child level are motor capacity, working memory capacity, visual impairments (CVI), and intellectual abilities (IQ). At the level of the parents, educational level, socio-economic status and parenting style are mediating factors. Seventy-five children will be recruited from the population known or treated at the participating rehabilitation centers. Outcome measures will be collected 2-4 weeks before the intervention period, immediately before and after the intervention period of 12 weeks, half way through the intervention and after a follow-up period of 12 weeks. Children will be randomly assigned to one of the three protocols. Both home-based protocols will be separately compared to the control group receiving therapy as usual, in order to establish the efficacy of each protocol. In addition, both home-based protocols will be compared to each other such that their relative efficacy can be established. Prior to the intervention, parents will be intensively involved and coached about both home-based protocols and how to apply them, by a multidisciplinary team consisting of a therapist and a remedial educationalist. With its main focus on the development and testing of a new home-based protocol that incorporates basic motor learning research (implicit learning) and testing its efficacy via a RCT, the present study takes the much needed next innovative step in home-based programs. Additionally, in collaboration with our international partners we developed an app that supports the parents in their choice of play material. This app will be made available free of charge at the start and its use will be registered during the project, such that its added benefit can be assessed. Based on this data, the app will be updated. Finally, a web-based parent forum will be developed to further support and communicate with the parents and their child.