CHAPTER 1 20 knowledge of the professional, augmentative and alternative communication, time for communication and the influence and power of the client57. Especially for children, it should be added to consider the right context, the creativity and ability of the professional to adjust ways of communication and the communication level to the child’s abilities58-62. In addition, these general communication guidelines, specific for gaining knowledge on meaningful activities it is useful to focus on ‘signal words’ that children use for the meaning of activities. Schot et al.63 studied this for the Dutch culture and found words as important, fun, useful, interesting, awesome, cosy, nice, and learning experience. In brief, as many children with a mitochondrial disorder experience communication problems15, it is important to be aware of all the factors influencing communication to gather information on the child’s volition-, habituation- and performance- subsystem, so person-centred paediatric care becomes a possibility. However, clear practical guidelines on how to start communication with a child and adapt this in practice, like a ‘decision- algorithm’, is missing. Measuring effectiveness of person-centred care To be able to tailor care to meaningful activities and measure its effectiveness, we need to be able to measure on a personalized level. In addition, measurements need to be ecologically valid, which means that the outcome should represent behaviour in the ‘real world’64. Translating this to an occupational therapy perspective, observing ecological valid occupational performance, incorporates that it fits with the nature of the person, environment and occupation (PEO-model). In addition, it should be sensitive to measure changes in occupational performance throughout the life-span, see Figure 265. Based on the PEO-model, we can formulate several requirements for a suitable assessment. Firstly, the assessment should be applicable to the different levels of functioning of the child (person component). For example, it should fit with the physical, cognitive, emotional and communicative abilities of the child. Secondly, the assessment should measure activities in the actual context (environment component). For instance the home or school environment, and not the hospital. Lastly, the assessment should fit with the activity preferences of the child (occupation component). In summary, integrating the three components of the PEO-model; the child should be able to choose which activity is measured, and perform this activity in its own way in its own environment. In addition, the measurement should not ask for specific assignment (unless it fits the actual situation), and should require little floor- and ceiling effects to fit to all different levels of functioning. In addition, to measure effectiveness of care and contribute to evidence based practice, it is
RkJQdWJsaXNoZXIy MjY0ODMw