title: Parents' Challenges and Physicians' Tasks in Disclosing Cancer to Children. A Qualitative Interview Study and Reflections on Professional Duties in Pediatric Oncology.
abstract: BACKGROUND
  Professional guidelines encourage physicians to provide children with as much information regarding their health as deemed developmentally and emotionally appropriate. However, empirical research indicates that in clinical practice, an open discussion with children about cancer is often lacking. This study explores impeding factors to and possible strategies for open communication of cancer diagnosis to children from the perspectives of parents and physicians.
  
  
  METHODS
  Semi-structured interviews were conducted with 18 parents of children with cancer and 10 treating oncologists. The patient sample was obtained from three pediatric units in Romania. Interviews were transcribed verbatim and interpreted using thematic analysis. Inductive open-coding procedures identified participants' accounts regarding their experiences with cancer diagnosis and treatment. Final themes were selected by grouping codes that formed a pattern in the data.
  
  
  RESULTS
  An interplay of mainly three different factors-information overload and emotional turmoil, lack of knowledge and skills for disclosing the diagnosis, and assumptions about burdening the child when discussing cancer-restricted parent-patient communication and subsequently affected physician-patient exchanges. Oncologists recommended open communication at diagnosis, but left the final decision to the parents. They adapted their communication style with patients to parents' preference.
  
  
  CONCLUSIONS
  Although physicians need to respect the wishes of children's legal representatives, they also have a duty to promote patients' best interests. We recommend that physicians employ a proactive stance in ensuring that children with cancer are appropriately informed about their diagnosis. In case of parents' arduous objections to full disclosure, an ethical consultation should be considered.
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
authors.forename: Domnita O
authors.initials: DO
authors.lastname: Badarau
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
authors.forename: Tenzin
authors.initials: T
authors.lastname: Wangmo
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
authors.forename: Katharina M
authors.initials: KM
authors.lastname: Ruhe
authors.affiliation: Department of Pediatric Oncology, St. Mary Emergency Hospital, Iasi, Romania.
authors.forename: Ingrid
authors.initials: I
authors.lastname: Miron
authors.affiliation: Department of Pediatric Hemato-oncology & Bone Marrow Transplantation, Fundeni Clinical Institute, Bucharest, Romania.
authors.forename: Anca
authors.initials: A
authors.lastname: Colita
authors.affiliation: Department of Pediatric Oncology, Prof. Dr. Al. Trestioreanu Oncology Institute, Bucharest, Romania.
authors.forename: Monica
authors.initials: M
authors.lastname: Dragomir
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.|Institute for Medical Ethics and History of Medicine, Ruhr University Bochum, Bochum, Germany.
authors.forename: Jan
authors.initials: J
authors.lastname: Schildmann
authors.affiliation: Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
authors.forename: Bernice S
authors.initials: BS
authors.lastname: Elger
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D035622:Parental Notification; D011369:Professional-Patient Relations; D012383:Romania; D014342:Truth Disclosure
keywords: cancer; diagnosis; medical communication; pediatric oncology