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Important future research for children with disabilities: where are we going?

‘Challenge the Boundaries’ is the theme for the International Conference on Cerebral Palsy and Other Childhood-Onset Disabilities to be held in Stockholm, 1 to 4 June 2016. This conference brings together the 5th International Cerebral Palsy Conference (ICPC), the 28th Annual Meeting of the European Academy of Childhood Disability (EACD), and the 1st Biennial Meeting of the International Alliance of Academies of Childhood Disability (IAACD). The challenge is to address the most important research questions so as to improve the quality of life for children with impairments across the world. Our knowledge of the living conditions for children with CP has increased dramatically in recent decades. In the 1990s, an important line of research described limitations from the perspective of motor control and biomechanics. Thanks to studies of fine motor control and postural control in children with CP, we developed a language to describe what we were observing in clinical practice. This raised questions about the impact of interventions on the children’s development. Traditionally popular methods were questioned, and new principles of treatment were established based on recent knowledge of how the central nervous system functions and how learning occurs. These developments challenged researchers to design intervention studies and evaluate new treatment models. The biggest obstacle was the difficulty in evaluating the effects of different treatments. There was a limited tradition of evaluation in the field, and we lacked valid assessment tools. Likewise, there was little experience in how to design intervention studies for this heterogeneous group of children. As a result, few sound intervention studies for children with CP were available before the 21st century; in fact, many researchers even doubted the possibility of designing intervention studies within this population. We have learned a lot in recent years, and we now have several evidence-based methods of intervention. One reason for this has been the development of several new assessment and classifications tools. Therefore, it is now possible to demonstrate that both hand function and gross motor function can improve through practice, at least in a short-term perspective. It is also possible to use a goaloriented approach to achieve different important skills for daily life activities. We know that health improves through physical activity, and this is even more marked in children with impairments. We know that care management for pain reduction is both possible and essential for children’s well-being. In recent years there has been increased interest in these children’s ability not only to ‘function’, but also to participate and be involved in diverse life situations. The children’s own wishes to be engaged and their ability to make decisions about their own environment have been highlighted as family-centred approaches have been developed. Yet major challenges remain. Although the UN Convention on the Rights of the Child stated, as far back as 1989, that children have the right to live and develop, and not to be discriminated by any disability, this is still not the case – and there is a huge knowledge gap about how to address many of these situations. We need to improve at translating our recent research knowledge into clinical practice. We need to identify new lines of research, from prevention of CP to using technology to increase wellness and participation. There are wide gaps between basic and clinical science, and between research and clinical practice, and vast differences in outcome depending on where in the world one lives. These gaps must be filled. This international conference will surely point out new directions and show us what needs to be the focus of future research, as well as build bridges between research and practice. By coming together to share knowledge about the state of the research and current evidence, to listen to top-ranked researchers, and to plan research and new collaborations, I am certain that we can create an important roadmap into the future.