Living in the Presence of Death: An Integrative Literature Review of Relatives’ Important Existential Concerns when Caring for a Severely Ill Family Member

Christina Melin-Johansson*, 1, Ingela Henoch2, 3, 6, Susann Strang4, 6, Maria Browall5, 6, 7
1 Mid Sweden University, Department of Health Sciences, Östersund, Sweden
2 Bräcke Diakoni Foundation, Research Unit, Gothenburg, Sweden
3 Karolinska Institutet, Institution of Learning, Informatics, Management and Ethics, Medical Management Centre, Stockholm, Sweden
4 Angered Local Hospital, Gothenburg, Sweden
5 Sahlgrenska University Hospital, Department of Oncology, Clinical Trial Unit. Gothenburg, Sweden
6 The Sahlgrenska Academy, University of Gothenburg, Institute of Health and Care Sciences, Sweden
7 School of Life Sciences, University of Skövde, Sweden

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© Melin-Johansson et al.; Licensee Bentham Open.

open-access license: This is an open access article licensed under the terms of the Creative Commons Attribution Non-Commercial License ( which permits unrestricted, non-commercial use, distribution and reproduction in any medium, provided the work is properly cited.

* Address correspondence to this author at the Mid Sweden University, Department of Health Sciences, Östersund, Sweden; Tel: +43 63 165672; Fax: +43 63 165626; E-mail:



The aim of this study was to explore relatives’ existential concerns when caring for a seriously ill family member as well as to describe interventions that meet these concerns.


In this integrative literature review we assessed and classified 17 papers, 12 qualitative and 5 quantitative. Literature was sought in the databases Cinahl, PubMed, Psykinfo and Web of Science in September 2009 and in March 2010. Search terms used in different combinations were: family, family caregiver, next of kin, relatives, palliative, palliative care, end-of-life care, existential, spirit*. Data were redrawn from the papers results/findings, and synthesized into a new descriptive content.


The results were categorized from 13 papers exploring relatives’ important existential concerns and 4 papers describing interventions aimed to support them in the existential area. A majority of the reviewed papers had been written in Sweden and concerned relatives of patients with cancer. One overarching theme, living in the presence of death, and three categories: responses to life close to death; support when death is near; and beyond the presence of death were created.


There is an urgent demand for large-scale studies using accurate methodology, as well as a need to design qualified investigations regarding the effects of various interventions, and to determine which interventions are the most effective in supporting relatives who experience existential distress manifested physically and/or psychologically. There is also a considerable demand for educational interventions among professionals in various healthcare settings to increase their knowledge regarding existential concerns among relatives.

Keywords: Cancer, end-of-life care, family, incurable illness, nursing, review.