Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology

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Schröder Håkansson, Anna,1964Gothenburg University,Göteborgs universitet,Institutionen för kliniska vetenskaper, Avdelningen för pediatrik,Institute of Clinical Sciences, Department of Pediatrics,Univ Gothenburg, Sweden; Sahlgrens Univ Hosp, Sweden (author)

Balancing values and obligations when obtaining informed consent: Healthcare professionals' experiences in Swedish paediatric oncology

Article/chapterEnglish2020

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2019-10-16
Wiley,2020

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LIBRIS-ID:oai:gup.ub.gu.se/286064
https://gup.ub.gu.se/publication/286064URI
https://doi.org/10.1111/apa.15010DOI
https://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-161385URI
http://kipublications.ki.se/Default.aspx?queryparsed=id:142039185URI

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Language:English

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SwePubSwePub

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Subject category:ref swepub-contenttype
Subject category:art swepub-publicationtype

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Funding Agencies|Swedish Childhood Cancer Fund [TJ2017-0068]
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.

Subject headings and genre

MEDICIN OCH HÄLSOVETENSKAP Klinisk medicin Pediatrik hsv//swe
MEDICAL AND HEALTH SCIENCES Clinical Medicine Pediatrics hsv//eng
MEDICIN OCH HÄLSOVETENSKAP Klinisk medicin Cancer och onkologi hsv//swe
MEDICAL AND HEALTH SCIENCES Clinical Medicine Cancer and Oncology hsv//eng
SAMHÄLLSVETENSKAP Annan samhällsvetenskap Övrig annan samhällsvetenskap hsv//swe
SOCIAL SCIENCES Other Social Sciences Other Social Sciences not elsewhere specified hsv//eng
ethics
healthcare professionals
informed consent
paediatric oncology
qualitative study
clinical-trials
cancer
children
nurses
communication
perceptions
physicians
Pediatrics
ethics; healthcare professionals; informed consent; paediatric oncology; qualitative study

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Pergert, P.Karolinska Institutet (author)
Abrahamsson, Jonas,1954Gothenburg University,Göteborgs universitet,Institutionen för kliniska vetenskaper, Avdelningen för pediatrik,Institute of Clinical Sciences, Department of Pediatrics,Univ Gothenburg, Sweden; Sahlgrens Univ Hosp, Sweden(Swepub:gu)xabrjo (author)
Stenmarker, Margaretha,1960Linköpings universitet,Gothenburg University,Göteborgs universitet,Institutionen för kliniska vetenskaper, Avdelningen för pediatrik,Institute of Clinical Sciences, Department of Pediatrics,Institutionen för klinisk och experimentell medicin,Medicinska fakulteten,Univ Gothenburg, Sweden; Reg Jonkoping Cty, Sweden(Swepub:liu)n/a (author)
Göteborgs universitetInstitutionen för kliniska vetenskaper, Avdelningen för pediatrik (creator_code:org_t)

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In:Acta Paediatrica: Wiley109:5, s. 1040-10480803-52531651-2227

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MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Clinical Medicin ...; and Pediatrics

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