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Erschienen in: European Journal of Pediatrics 9/2016

01.08.2016 | Original Article

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

verfasst von: Katharina Maria Ruhe, Tenzin Wangmo, Eva De Clercq, Domnita Oana Badarau, Marc Ansari, Thomas Kühne, Felix Niggli, Bernice Simone Elger, on behalf of the Swiss Pediatric Oncology Group (SPOG)

Erschienen in: European Journal of Pediatrics | Ausgabe 9/2016

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Abstract

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.
What is Known:
Adequate participation of pediatric patients in communication and decision-making is recommended by professional guidelines but little guidance exists as to how to translate it into practice.
What is New:
The strategies used by physicians, parents, and patients to achieve participation are complex and serve to both enable and restrict childrens and adolescentsinvolvement.
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Metadaten
Titel
Putting patient participation into practice in pediatrics—results from a qualitative study in pediatric oncology
verfasst von
Katharina Maria Ruhe
Tenzin Wangmo
Eva De Clercq
Domnita Oana Badarau
Marc Ansari
Thomas Kühne
Felix Niggli
Bernice Simone Elger
on behalf of the Swiss Pediatric Oncology Group (SPOG)
Publikationsdatum
01.08.2016
Verlag
Springer Berlin Heidelberg
Erschienen in
European Journal of Pediatrics / Ausgabe 9/2016
Print ISSN: 0340-6199
Elektronische ISSN: 1432-1076
DOI
https://doi.org/10.1007/s00431-016-2754-2

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