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What do people agree to when stating willingness to donate?: On the medical interventions enabling organ donation after death
Social Work in Health Care, Karolinska University Hospital, Stockholm, Sweden; Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden.
Program Management Office (PMO), New Karolinska, Karolinska University Hospital, Stockholm , Sweden; Department of Learning, Informatics, Managemen t and Ethics (LIME), Karolinska Institutet, Stockholm, Sweden.
2018 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 13, no 8, article id e0202544Article in journal (Refereed) Published
Abstract [en]

Purpose of the study

The purpose of this study is to explore donor relatives’ experiences of the medical interventions enabling organ donation, as well as to examine the donor relatives’ attitudes towards donating their own organs, and whether or not their experiences have influenced their own inclination to donate.

Methods

The experiences of donor relatives were explored via in-depth interviews. The interviews covered every step from the deceased family member being struck by a severe bleeding in the brain till after the organ recovery, including the medical interventions enabling organ donation. The interviews were analysed through qualitative and quantitative content analysis.

Results

Brain death and organ donation proved to be hard to understand for many donor relatives. The prolonged interventions provided after death in order to enable organ donation misled some relatives to believe that their family member still was alive. In general, the understanding for what treatment aimed at saving the family member and what interventions aimed at maintaining organ viability was low. However, most donor relatives were either inspired to, or reinforced in their willingness to, donate their own organs after having experienced the loss of a family member who donated organs.

Conclusions

There is a need for greater transparency regarding the whole chain of events during the donation process. Yet, having experienced the donation process closely did not discourage the donor relatives from donating their own organs–but rather inspired a willingness to donate. This indicates an acceptance of the medical procedures necessary in order to enable organ donation after death.

Place, publisher, year, edition, pages
2018. Vol. 13, no 8, article id e0202544
National Category
Other Medical Sciences
Identifiers
URN: urn:nbn:se:hig:diva-27862DOI: 10.1371/journal.pone.0202544ISI: 000442722500017PubMedID: 30142168Scopus ID: 2-s2.0-85052239191OAI: oai:DiVA.org:hig-27862DiVA, id: diva2:1245874
Note

The interviews (data) are stored in a locked and secure place at Karolinska University Hospital, according to the policy at the hospital and the Karolinska Institutet. The participants of the study have not consented to the public sharing of the interviews as this could jeopardize their guaranteed anonymity. For ethical reasons and reasons of integrity, the transcribed interviews can only be provided after the removal of all personal data and other sensitive information. Furthermore, an additional – and approved – ethics application is needed. For data request, please contact the head of department, Carl Johan Sundberg at the Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, by e-mail to: Carl.J.Sundberg@ki.se.

LGK received financial support from: Svensk Njurmedicinsk Förening, Patient Organisation, www.njurmed.se; Stiftelsen Professor Lars-Erik Gelins, Minnesfond, Foundation in memory of Professor Lars-Erik Gelin, www.gelinfonden.org;L. Jacobssons testamente, foundation in memory of L. Jacobsson; and Stiftelsen Stig och Gunborg Westman, private foundation, www.stiftelsemedel.se/stiftelsen-stig-och-gunborg-westman-fr-forskning-kring-njursjukdomar-organtransplantation-och-organdonation.

Available from: 2018-09-06 Created: 2018-09-06 Last updated: 2018-09-24Bibliographically approved

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