GENERAL INTRODUCTION 19 1 co-operative team of professionals37. Translating the focus of patient-centred care to paediatric health-care, there are different terms used in literature; child-centred care, family- and child-centred care or child- and family-centred care. However, it is clear that we need to honour the children’s right to be active participants and active partners along with their parents in their health care38. To clarify, there are several reasons to invest in uncovering the child’s perspective; firstly, the UN convention on Rights of the Child states that children have a right to express their opinions about issues affecting them and the right to have these views heard39-41; secondly, these rights on the Convention must be applied without discrimination, regardless of whether a persons is disabled41, 42; thirdly, it is known that relying on parents or carers for insight into their child’s experiences is not the best choice43-46; and lastly, as the meaning of activities relate to Self-Determination Theory (SDT), using meaningful activities can motivate the children and therefore improve effectiveness of care47-50. Therefore, it is quite self-evident that we need to incorporate the child’s perspective to provide person-centred care to children43, 51. According to Söderback, a child-centred approach “includes both the adult’s child’s perspective concerning the children’s best interests in terms of care and the child’s perspective with respect to his or her preferences”52. Whereas professionals do not find it difficult to capture the adults perspective on their child, incorporating the child’s perspective itself can be more challenging38. Incorporating the child’s perspective can be translated to knowing what the personal wishes and needs of the child are. But to be truly person-centred, knowledge should go further than that. Based on the Model of Human Occupation (MOHO)53-55, an insight in the ‘volition’ subsystem, the ‘habituation’ subsystem and the ‘performance’ subsystem is necessary as these are the personal aspects that influence meaningful occupational performance. The volition subsystem embodying the self-efficacy, values and interests of the child, the habituation subsystem embodying the roles and habits of the child, and the performance subsystem embodying the skills or performance capacity of the child. To get insight into these three subsystems subjective measurement (e.g. interviewing the child) and objective measurement (e.g. observing/assessing the child) is recommended. While there are challenges for both subjective and objective measurement, in this paragraph we will focus on the challenges for subjective measurement. For subjective measurement, interviewing children can be problematic due to several reasons; e.g. children’s level of linguistic communication, their cognitive development, the question-and answer setting, and the power dynamics between the adult and the child56. However, overcoming these problems is important, as effective communication about wishes and needs is important for person-centred care, especially for “communication vulnerable people”57. It is known that the main influencing factors in the communication betweenclients andprofessionals are: efforts put into improving thecommunication,
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