Balancing research interests and patient interests: a qualitative study into the intertwinement of care and research in paediatric oncology

Pediatric Blood & Cancer
Sara A S DekkingJohannes J M van Delden

Abstract

Traditionally, in ethical guidelines and in research ethics literature, care and research are clearly separated based on their different objectives. In contrast, in paediatric oncology, research and care are closely combined. Currently, it is unknown how relevant actors in paediatric oncology perceive this combination of research and care. We conducted a qualitative study into the experiences of those involved in Dutch paediatric oncology with the intertwinement of research and care and the dual role of paediatric oncologists as researchers and treating physicians. A qualitative study approach, using two focus groups and 19 semi-structured, in-depth interviews with paediatric oncologists, research coordinators, parents of children with cancer, and adolescents with cancer. Four themes characterize how actors experience the intertwinement of research and care in paediatric oncology. First, research is considered of major importance, and paediatric oncology professionals convey this message to patients and their parents. Second, there is ambiguity about categorization of studies into cancer therapy as either research or treatment. Third, role conflicts appear within the work of the paediatric oncologists. Finally, the various bene...Continue Reading

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Citations

May 3, 2018·Cancer Control : Journal of the Moffitt Cancer Center·Ghiath Alahmad
Mar 15, 2019·Journal of Empirical Research on Human Research Ethics : JERHRE·Lucinda Manda-TaylorKristan Elwell
Apr 18, 2019·The American Journal of Bioethics : AJOB·Stephanie R MorainEmily A Largent
Apr 16, 2020·Cancer Control : Journal of the Moffitt Cancer Center·Ghiath AlahmadHaneen Alzahrani
Jun 6, 2020·Molecular Genetics & Genomic Medicine·Anna ByrjalsenAyo Wahlberg
Sep 28, 2017·AJOB Empirical Bioethics·Domnita O BadarauTenzin Wangmo
Apr 16, 2018·Learning Health Systems·Rieke van der GraafJohannes J M van Delden
Sep 24, 2019·The American Journal of Bioethics : AJOB·Sara A S DekkingJohannes J M van Delden
Jan 14, 2021·BMJ Paediatrics Open·Beate AurichEvelyne Jacqz-Aigrain
Apr 8, 2021·The American Journal of Bioethics : AJOB·Brittany M Lee, Stephanie A Kraft

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