title: Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology.
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.
  
  
  CONCLUSIONS
  Adequate training of professionals to successfully translate the principle of patient participation into practice is required.
  
  
  BACKGROUND
  •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.
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.
authors.forename: Katharina Maria
authors.initials: KM
authors.lastname: Ruhe
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland. Tenzin.Wangmo@unibas.ch.
authors.forename: Tenzin
authors.initials: T
authors.lastname: Wangmo
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.
authors.forename: Eva
authors.initials: E
authors.lastname: De Clercq
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.
authors.forename: Domnita Oana
authors.initials: DO
authors.lastname: Badarau
authors.affiliation: Department of Pediatrics, Oncology and Haematology Unit, Geneva University Hospital, Geneva, Switzerland.
authors.forename: Marc
authors.initials: M
authors.lastname: Ansari
authors.affiliation: Department of Pediatric Oncology and Haematology, University Children's Hospital of both Basel (UKBB), Basel, Switzerland.
authors.forename: Thomas
authors.initials: T
authors.lastname: Kühne
authors.affiliation: Department of Pediatric Oncology, University Children's Hospital, Zurich, Switzerland.
authors.forename: Felix
authors.initials: F
authors.lastname: Niggli
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.
authors.forename: Bernice Simone
authors.initials: BS
authors.lastname: Elger
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D003657:Decision Making; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008495:Medical Oncology; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010358:Patient Participation / Q000379:methods*; D010372:Pediatrics; D010817:Physician-Patient Relations; D011368:Professional-Family Relations; D036301:Qualitative Research; D014342:Truth Disclosure
keywords: Adolescents; Children; Oncology; Participation; Pediatrics; Practice