Katharina Maria Ruhe

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Within the frameworks of shared decision-making and participation in healthcare, children’s ability to understand and appreciate information pertaining to illness and treatment is important. Physicians are mainly responsible for assessing decision-making capacity (DMC) but may encounter difficulties arising from the limited basis of evidence with regard to(More)
The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children's participation in(More)
BACKGROUND Professional guidelines encourage physicians to provide children with as much information regarding their health as deemed developmentally and emotionally appropriate. However, empirical research indicates that in clinical practice, an open discussion with children about cancer is often lacking. This study explores impeding factors to and(More)
OBJECTIVE The aim of the present study is to explore patient's perspectives in pediatric oncology on participation in discussions and decision-making surrounding their cancer diagnosis. METHODS Seventeen patients between 9 and 17 years of age receiving treatment at centers of the Swiss Pediatric Oncology Group were interviewed for this study. Their(More)
QUESTIONS UNDER STUDY This paper explores parents' and patients' satisfaction with care in Swiss paediatric oncology settings and examines difficulties experienced while undergoing treatment for cancer. METHODS Semistructured interviews were conducted with 19 parents, and with 17 children who were diagnosed with cancer and receiving treatment. During(More)
Adequate participation of children and adolescents in their healthcare is a value underlined by several professional associations. However, little guidance exists as to how this principle can be successfully translated into practice. A total of 52 semi-structured interviews were carried out with 19 parents, 17 children, and 16 pediatric oncologists.(More)
Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the(More)
BACKGROUND Information provision is an important step in enabling pediatric patients to participate in healthcare. Storybooks and patient information brochures represent a channel through which children and adolescents with cancer are informed about their illness. However, the use of such written materials has received little academic attention. OBJECTIVE(More)
Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children's position in decision-making. The purpose of the paper is to(More)
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