CHAPTER 9 230 developmental potential of the children and enabled the shift from a medical approach with a focus on disease and (mal)functions to a participation-based approach with a focus on what could be a meaningful improvement on the level of activity. However, there is still potential for enhancement of the GAS in acknowledging the developmental potential. The GAS rates the ‘current situation’ with a score -2 and the expected achievable goal with 0, and the ‘much more than expected’ with +2. As only one variable can change with an improvement of +1 or -1, the GAS implicitly suggests that a change of 2 variables is achievable. As a consequence, to acknowledge developmental potential steps are formulated bigger which is not desirable in consideration of a mitochondrial disorder. An alternative is to lower the goal that is set on zero. To illustrate based on our study, Xandra wanted to dress herself54. The current situation was ‘extra encouragement and steering is needed to get to action; undergarments succeed but are backwards, outerwear and slippers are done by parents.’ There are four variables that need improvement to get dressed independently; the encouragement/steering, undergarments done correctly, outerwear done by herself and the slippers done by herself. But only two variables can be changed to get from -2 (the current situation) tot the goal (0). As a result, the ultimate goal was set on +2 and she ended with a score of +1 after 6 weeks. Overall, three out of eight improved goals ended up with a score higher than 0. Therefore, it could be discussed if the GAS gives enough room for the developmental potential in combination with valuing each small progress. Therefore, I suggest studying if adapting the GAS to a score of 0 for the current situation (as it is neutral), a score of -2 for deterioration and a score of, at least, +5 to thegoal canbe applied tomost activities and is suitable for acknowledging the developmental potential. Overall, I suggest that we should focus on the developmental potential of the children with mitochondrial disorder by using a family centred participation-focused approach in the non-acute healthcare. However, I would like to point out that it is not my intention to exclude the biomedical approach. After all, it is a prerequisite that the child is doing well medically in order to have room to use his or her developmental capacity. And vice versa; being able to use the development capacity can influence the biomedical state. Therefore, I suggest to combine the approaches in which the participation-focused approach can also be used for monitoring the impact of the disease on everyday life and can analyse the (changing) abilities necessary for performing everyday activities. This requires focusing on ‘things that matter’, which implies a focus on values56. Therefore, in order to be more child-centred and participation-focused, a shift from norm-based thinking to values is required. In establishing this shift among clinicians, allied health care professionals and parents, discussing the outcome of the combined use of COPM and GAS can be helpful.
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