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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
Kühne, Thomas
Niggli, Felix
Published in European Journal of Pediatrics. 2016, vol. 175, no. 9, p. 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.
Keywords AdolescentAdultChildDecision MakingFemaleHumansInterviews as TopicMaleMedical OncologyMiddle AgedNeoplasms/psychology/therapyParent-Child RelationsParents/psychologyPatient Participation/methodsPediatricsPhysician-Patient RelationsProfessional-Family RelationsQualitative ResearchTruth Disclosure
PMID: 27480942
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Research group Oncologie et hématologie pédiatrique (907)
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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 https://archive-ouverte.unige.ch/unige:96543

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Deposited on : 2017-09-06

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