GENERAL DISCUSSION 229 9 At the Mitochondrial Disease Expertise Centre (RCMM) children are monitored on all aspects of the International Classification of Functioning Disability and Health (ICF). It is recognized that some clinicians tend to focus more on the traditional components of the ICF such as “body function”, rather than on overarching and meaningful components like “participation”39-42, while participation is linked to the development of physical, psychological and social emotional skills and competencies, and has a positive impact on child’s development, health and wellbeing 43-48. Although it is understandable that the approach on themanagement of mitochondrial disorders is still dominated by the biomedical focus, especially in the acute stages of the disease, I argued in chapter 1 that the concept of ‘positive health’49-51 would fit better with the progressiveness of the disease and with person centred care. However, this concept still focuses on the individual to self-manage, instead of a context-based approach that focuses on the interaction of the person, occupation and environment (PEO-model)52 as explained in the first chapter of this thesis. Hence, the different health definitions do not incorporate the important role of parents, and do not acknowledge the developmental potential of children. Therefore, I suggest a shift to a more family-centred, participation-focused approach on health, which acknowledges that participation is an outcome of an ongoing interaction between the person, the occupations and the environment52. The shift to family-centred, participation-focused care is in line with the desirable child-centred approach which requires individualized and value-based goal setting in collaboration between child, parents and clinicians, but this collaborative goal setting can be challenging24, 53. As an example from our last study; a child chose to work on ‘drawing a dinosaur’, while the parent wanted to focus on the child’s handwriting as she felt that this was more relevant for daily life54. The researcher collaborated with the mother, expressed that the handwriting would also benefit from improving drawing and was probably a more efficient way for therapy as this fitted with the child’s motivation. However, in cases where there is not a direct link between the child’s goal and the parent’s goals, this can be challenging. Therefore, Brewer, Pollock 53 suggest the use of the Canadian Occupational Performance Measure (COPM) and Goal Attainment Scaling (GAS) as an instrument for collaborative goal setting. Although, we experienced that the use of COPM supported meaningful goalsetting, scoring these goals was done with a normative frame of reference which is in contrast to the participation-focused paradigm, and in contrast to the GAS38, 54. Interestingly, previous research shows that the combined use of COPM and GAS results in client-centred goals even with clients with moderate to severe impairment in self-awareness55. In my experience, the combined use of COPM and GAS supports parents to focus on the, sometimes small, steps in improving the quality of performance of the activity, enabling the incorporation of the child’s perspective54. Therefore, it acknowledged the
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