CHAPTER 1 18 none to extremely high15; whereas some children remain in a mainstream school and achieve normal milestones, others barely interact with their environment30. The clinical guideline of management of patients with mitochondrial disorders focuses on interdisciplinary treatment existing of general advices regarding nutrition, medication, exercise, and recurrence risk31, but doesn’t address advices or treatment that focuses on optimizing engagement in daily activities. Although this is remarkable in relation to the recent focus on personalized medicine, it shows that the overall approach is still dominated by the biomedical focus. In addition, the World Health Organization (WHO) still uses the definition on health as “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’32 . While this was ground-breaking when developed in 1948 because it embodied mental and social aspects next to physical aspects, it still focuses on ‘functions’ instead of activity or participation. Hence, in 2011 a new concept was proposed as to ‘Health as the ability to adapt and to self-manage’, in the face of social, physical and emotional challenges33. This concept of ‘positive health’ focuses, amongst other factors, on meaningful daily activities and participation and on resilience33-35, which determines the ability to perform (and adapt) meaningful activities. This focus seems more fitting with the progressiveness of the disease and with person-centred care. Therefore, since no cure for this progressive disorder is available yet, it is important to not only focus on the biomedical treatment, but also and especially monitor the course of the disorder on the level of meaningful occupational performance to maintain and/or improve quality of life. Challenge for person-centred care to address the child’s perspective in health care Since the late 90s there is an increasing interest for patient centred care, which then means ‘taking into account the patient’s desire for information and for sharing decision making and responding appropriately’36. Although, there is no universal definition of patient-centred care, there are three themes that can be identified37: patient participation and involvement, the relationship between the patient and the healthcare professional, and the context where care is delivered. While the latter one is the most difficult to change or influence, the first two themes are important to incorporate into the care. Sub-themes of patient participation and involvement are: 1) patient participating as a respected and autonomous individual, 2) care plan based on patients individual needs, and 3) addressing a patient’s physical and emotional needs. Sub-themes of relationship between the patient and the health professional are: 1) genuine relationship, 2) open communication, 3) health professional having appropriate skills and knowledge, and 4) a cohesive and
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