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


Ruhe, Katharina Maria; Wangmo, Tenzin; De Clercq, Eva; Badarau, Domnita Oana; Ansari, Marc; Kühne, Thomas; Niggli, Felix; Elger, Bernice Simone; Swiss Pediatric Oncology Group (SPOG) (2016). Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology. European Journal of Pediatrics, 175(9):1147-1155.

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 children's and adolescents' involvement.

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 children's and adolescents' involvement.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:September 2016
Deposited On:20 Jan 2017 09:30
Last Modified:20 Jan 2017 09:30
Publisher:Springer
ISSN:0340-6199
Publisher DOI:https://doi.org/10.1007/s00431-016-2754-2
PubMed ID:27480942

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