en
Scientific article
English

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

Published inEuropean Journal of Pediatrics, vol. 175, no. 9, p. 1147-1155
Publication date2016
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.

Keywords
  • Adolescent
  • Adult
  • Child
  • Decision Making
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Medical Oncology
  • Middle Aged
  • Neoplasms/psychology/therapy
  • Parent-Child Relations
  • Parents/psychology
  • Patient Participation/methods
  • Pediatrics
  • Physician-Patient Relations
  • Professional-Family Relations
  • Qualitative Research
  • Truth Disclosure
Citation (ISO format)
RUHE, Katharina Maria et al. Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology. In: European Journal of Pediatrics, 2016, vol. 175, n° 9, p. 1147–1155. doi: 10.1007/s00431-016-2754-2
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ISSN of the journal0340-6199
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