Sonja Mensch

116 Chapter 6 Instruments Motor abilities Motor abilities were measured by the mo tor e va luation in k ids with i ntellectual and c omplex disabilities (Movakic) instrument, a digital instrument that was specifically developed for the evaluation of motor abilities in children with SMD (Mensch et al. 2015c). This instrument was developed because instruments applicable to children with severe disabilities were lacking (Mensch et al. 2015b) and the existing tests have been proven inadequate (Mensch et al. 2015c). The structure of Movakic is shown in table A1 of the appendix. Motor abilities are distributed over 12 situations, each representing a client’s body position: lying, sitting and standing, with or without the use of a device. Each situation consists of a cluster of items addressing four groups of motor abilities: maintaining position, activities, changing body position, andmoving around. Questions were asked about the extent to which manual support or support from a device is needed, the own activity of the child, and the extent of stimulating the child manually, i.e. ’facilitation’ by enabling a child to actively participate in a certain motor ability. Because all childrenhavedifferent abilities or disabilities anddifferent therapeutic goals, only situations that are relevant to the child need to be scored, based on the therapist’s experience of the child’s motor abilities. All items are scored on a five-point Likert-scale. The maximum total scores of the 12 situations differ because of the variable number of items. Therefore, situation scores and total Movakic scores are converted into percentage scores (range 0-100). A higher score is associated with better motor abilities within each chosen situation. Additional information on Movakic’s items and sub-questions is given in appendix A. Movakic was judged clinically relevant and suitable for the target population and has adequate content validity (Mensch et al. 2015c). Its test-retest and inter-rater reliability are excellent or good (ICC .72-.98) (Mensch et al. 2015a), its construct validity is good ( r = .50 - .71) and Movakic is responsive to change resulting from events that might impact motor ability (Mensch et al. 2016). Quality of Life For measuring the QoL in children with SMD, we used the ‘Quality of Life - Profound Multiple Disabilities’ (QoL-PMD) (Petry et al. 2009a; Petry et al. 2009b; Petry et al. 2008). Because of the communication difficulties of children with SMD proxy measures of QoL in multiple dimensions were assessed. The QoL-PMD is a multidimensional questionnaire consisting of 55 items. These items consist of statements related to the life of the child with SMD and are divided into six subscales: physical well-being, material well-being, communication & influence, socio-emotional well-being, development, and activities. The items are scored on a 4-point scale (agree, partly agree, disagree and