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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Abbreviations
- SPOG:
-
Swiss Pediatric Oncology Group
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Acknowledgments
The authors would like to express their gratitude to Prof. Dr. Lainie Ross (Department of Pediatrics, Medicine, and Surgery, University of Chicago, Chicago, USA) and Prof. Dr. Benjamin Wilfond (Department of Pediatrics, University of Washington, Seattle, USA) for their fruitful collaboration.
Authors’ contributions
Katharina Maria Ruhe collected and analyzed the data, drafted the initial manuscript, and approved the final manuscript as submitted.
Dr. Tenzin Wangmo drafted the study design, designed the data collection instruments, supervised data collection, analyzed the data, critically revised the initial manuscript, and approved the final manuscript as submitted.
Dr. Eva De Clercq collected and analyzed the data, critically revised the initial manuscript, and approved the final manuscript as submitted.
Dominata Oana Badarau assisted in analyzing the data, critically revised the initial manuscript, and approved the final manuscript as submitted.
Dr. Marc Ansari assisted with recruitment, critically revised the initial manuscript, and approved the final manuscript as submitted.
Dr. Thomas Kühne assisted with the proposal and recruitment for this study, critically revised the initial manuscript, and approved the final manuscript as submitted.
Dr. Felix Niggli assisted with the proposal and recruitment for this study, critically revised the initial manuscript, and approved the final version as submitted.
Dr. Bernice Simone Elger conceived the study, drafted the design, supervised data collection, analyzed the data, critically revised the manuscript, and approved the final manuscript submitted.
The Swiss Pediatric Oncology Group (SPOG) endorsed the study and made a substantial contribution to recruitment and data collection. The members mentioned critically revised and approved the final manuscript as submitted.
All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
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The study was funded by the Swiss National Science Foundation (SNF), National Research Programme 67 “End of Life,” Grant No. 406740_139283/1. Domnita Oana Badarau was funded by the Botnar Grant of the University of Basel.
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The authors declare that they have no conflict of interest.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
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Communicated by Jaan Toelen
Authors in the Swiss Pediatric Oncology Group are: Regula Angst, MD (Aarau); Maja Beck Popovic, MD (Lausanne); Pierluigi Brazzola, MD (Bellinzona); Heinz Hengartner, MD (St. Gallen); Johannes Rischewski, MD (Luzern).
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Ruhe, K.M., Wangmo, T., De Clercq, E. et al. Putting patient participation into practice in pediatrics—results from a qualitative study in pediatric oncology. Eur J Pediatr 175, 1147–1155 (2016). https://doi.org/10.1007/s00431-016-2754-2
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DOI: https://doi.org/10.1007/s00431-016-2754-2