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Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology
Author(s) -
Schröder Håkansson Anna,
Pergert Pernilla,
Abrahamsson Jonas,
Stenmarker Margaretha
Publication year - 2020
Publication title -
acta paediatrica
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.772
H-Index - 115
eISSN - 1651-2227
pISSN - 0803-5253
DOI - 10.1111/apa.15010
Subject(s) - medicine , grounded theory , autonomy , harm , informed consent , qualitative research , context (archaeology) , nursing , health care , health professionals , parental consent , pediatric oncology , distress , family medicine , alternative medicine , psychology , social psychology , social science , cancer , law , economic growth , pathology , sociology , biology , paleontology , political science , economics , clinical psychology
Abstract Aim To explore Swedish healthcare professionals’ (HCPs) clinical experiences of the informed consent process (ICP) and to compare experiences between the professions. Methods In this nationwide study six paediatric oncologists (POs) and eight research nurses (ReNs) from all Swedish paediatric oncology centres were interviewed. The material was analysed using Grounded theory, a qualitative constant comparative method. Results The participants’ main concern was how to fulfil research obligations without putting too much strain on a family in acute crisis, which led to the core category of balancing values and obligations of both healthcare and research. To handle the challenges the participants’ struggled to safeguard the families from psychological harm, tried to adjust to the families, and gradually introduced research while building trust. The conceptual model developed in the study highlights potential consequences of this balancing act with a risk of diminishing the family's autonomy through HCPs acting authoritatively (in particular POs) or with overprotection (in particular ReNs). Conclusion Paediatric oncology is a research integrated healthcare environment. The HCPs need personal, professional and institutional support regarding ICP‐related ethical issues, decisions and implications in this intertwined context. Furthermore, HCPs need to be aware of the potential long‐term risk of developing professional moral distress.