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Putting patient participation into practice in pediatrics—results from a qualitative study in pediatric oncology

Type of publication Peer-reviewed
Publikationsform Original article (peer-reviewed)
Author Ruhe Katharina Maria, Wangmo Tenzin, De Clercq Eva, Badarau Domnita Oana, Ansari Marc, Kühne Thomas, Niggli Felix, Elger Bernice Simone,
Project Attitudes and motives concerning end-of-life decisions: competency and autonomy of children and adolescents in paediatric oncology
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Original article (peer-reviewed)

Journal European Journal of Pediatrics
Volume (Issue) 175(9)
Page(s) 1147 - 1155
Title of proceedings European Journal of Pediatrics
DOI 10.1007/s00431-016-2754-2


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. Questions pertained to participants' experiences with patient participation in communication and decision-making. Applied thematic analysis was used to identify themes with regard to participation. Three main themes were identified: (a) modes of participation that captured the different ways in which children and adolescents were involved in their healthcare; (b) regulating participation, that is, regulatory mechanisms that allowed children, parents, and oncologists to adapt patient involvement in communication and decision-making; and (c) other factors that influenced patient participation. This last theme included aspects that had an overall impact on how children participated. Patient participation in pediatrics is a complex issue and physicians face considerable challenges in facilitating adequate involvement of children and adolescents in this setting. Nonetheless, they occupy a central role in creating room for choice and guiding parents in involving their child. CONCLUSION: Adequate training of professionals to successfully translate the principle of patient participation into practice is required.