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Next of kin's feelings of guilt and shame in end-of-life care
Örebro University ; Ersta Sköndal University.
Karolinska Institute ; Gotland University College.
2007 (English)In: Contemporary Nurse: health care across the lifespan, ISSN 1037-6178, E-ISSN 1839-3535, Vol. 27, no 1, 61-72 p.Article in journal (Refereed) Published
Abstract [en]

In this study the aim was to explore and describe next of kin’s feelings of guilt and shame in end-of-life care via secondary analysis of 47 qualitative interviews. In the analysis categories and subcategories emerged which conveyed how the next of kin experienced guilt; not having done or talked enough, being absent at important events or making errors of judgement. Categories conveying feelings of shame were situations where the next of kin felt inferior, was ashamed on behalf of the dying person and when family conflicts became apparent. Receiving help and support in order to make the remaining period as pleasant as possible can facilitate the next of kin’s sense of having fulfilled their duties and responsibilities and therein reduce feelings of guilt and shame. It is apparent that these feelings should be taken into account and the next of kin should receive support to increase their well-being during the remaining time in end-of-life care and the grieving period.

Place, publisher, year, edition, pages
Taylor & Francis, 2007. Vol. 27, no 1, 61-72 p.
Keyword [en]
palliative care, nursing, relatives, next of kin, family carers, shame, guilt
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
URN: urn:nbn:se:lnu:diva-23636DOI: 10.5172/conu.2007.27.1.61OAI: oai:DiVA.org:lnu-23636DiVA: diva2:594124
Available from: 2013-01-21 Created: 2013-01-21 Last updated: 2017-12-06Bibliographically approved
In thesis
1. Guilt and shame in end-of-life care: the next-of-kin's perspectives
Open this publication in new window or tab >>Guilt and shame in end-of-life care: the next-of-kin's perspectives
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin’s experiences of guilt and shame in end-of-life care.

Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin’s experiences of guilt (Study III), and shame (Study IV) in end-of-life care.

Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self.  The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin’s self.

Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Place, publisher, year, edition, pages
Växjö, Kalmar: Linnaeus University Press, 2012. 91 p.
Series
Linnaeus University Dissertations, 106/2012
Keyword
end-of-life care, guilt, hermeneutics, next-of-kin, relatives, secondary analysis, semantic concept analysis, shame
National Category
Other Medical Sciences not elsewhere specified
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-23637 (URN)978-91-86983-88-8 (ISBN)
Public defence
2012-12-14, Myrdal, Hus K, Växjö, 10:30 (Swedish)
Opponent
Supervisors
Available from: 2013-01-22 Created: 2013-01-21 Last updated: 2016-11-24Bibliographically approved

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Werkander Harstäde, Carina

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