Sonja Mensch

145 SUMMARY Chapter 1. General introduction This thesis starts by introducing the group of children with severe multiple disabilities and their severe health problems through a case description of Jeroen. Such health problems are often linked to or arise as a result of their severe motor disabilities. Motor abilities are the field of the (pediatric) physiotherapist. We describe how – although the disabilities will always remain severe - even small changes in motor abilities, with or without support, may lead to an increased control over their own life, resulting in a better quality of life. In addition to the benefits for children, the burden of care for parents and caregivers may also be diminished. Information is given about the International Classification of Functioning, Disability and Health for Children and Youth from the World Health Organisation (ICF-CY). This classification conceptualizes functioning as an interaction between the levels of ‘body functions and anatomical characteristics’, ‘activities’ and ‘participation’. Activities and participation are influenced by ‘environmental factors’ and ‘personal characteristics’. The physiotherapist focuses mainly at improving the activity level, whereas multidisciplinary collaboration in treatment and support is mainly directed towards positively impacting at the participation level. In current clinical practice, evaluation of the often-subtle effects of interventions, that may take longer periods of time, is primarily based on subjective information of the therapist. Nationally and internationally, the need for a method to more objectively measure and follow up clinical progression or deterioration in this group of children (and adults) is increasingly being felt in the field of physiotherapy. Therefore, finding, adapting or developing such an objective method, applicable to this relatively small group of children with very specific problems was the aim of the studies described in this thesis. Chapter 2. Instruments for the evaluation of motor abilities for children with severe multiple disabilities: A systematic review of the literature Eighteen studies in groups of children with different motor conditions and disabilities were found; they described a total of eight instruments. One of these had been specifically developed for the group of children with severe multiple disabilities. Quality of all studies was judged using the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) protocol. Reliability as well as validity and responsivity had been studied in only two instruments. Of all eight instruments, only part of the essential statistical properties had been evaluated, or methodological quality was unsatisfactory, or outcomes of different studies were contradictory. Summary