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      Meanings of existential uncertainty and certainty for people diagnosed with cancer and receiving palliative treatment: a life-world phenomenological study

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          Abstract

          Background

          Many people around the world are getting cancer and living longer with the disease. Thanks to improved treatment options in healthcare, patients diagnosed with advanced gastrointestinal cancer can increasingly live for longer. Living with cancer creates existential uncertainty, but what does this situation mean for the individual? The purpose of the study is to interpret meanings of existential uncertainty and certainty for people diagnosed with advanced gastrointestinal cancer and receiving palliative treatment.

          Methods

          This study is part of a larger project in which 7 men and 7 women aged between 49 and 79 participated in a study of information and communication for people with advanced gastrointestinal cancer. A total of 66 interviews were conducted with participants who were followed up over time. The narrative interviews were transcribed verbatim and the texts were analysed in three steps: naive reading, structural analysis and interpreted whole by utilizing a phenomenological life-world approach.

          Results

          This study has identified different spheres in which people diagnosed with advanced gastrointestinal cancer vacillate between existential uncertainty and certainty: bodily changes, everyday situations, companionship with others, healthcare situations and the natural environment. Existing in the move between existential uncertainty and certainty appears to change people’s lives in a decisive manner. The interview transcripts reveal aspects that both create existential certainty and counteract uncertainty. They also reveal that participants appear to start reflecting on how the new and uncertain aspects of their lives will manifest themselves –a new experience that lays the foundation for development of knowledge, personal learning and growth.

          Conclusions

          People diagnosed with advanced gastrointestinal cancer and receiving palliative care expressed thoughts about personal learning initiated by the struggle of living with an uncertain future despite their efforts to live in the present. Their personal learning was experienced through a changed life for themselves and having to confront their own pending death and develop self-insight regarding finality of life. Healthcare professionals can try to support people receiving palliative treatment for cancer by diversifying avenues for their personal growth, thus helping them manage their existential uncertainty and gravitate towards greater existential certainty.

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          Most cited references31

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          A phenomenological hermeneutical method for researching lived experience.

          This study describes a phenomenological hermeneutical method for interpreting interview texts inspired by the theory of interpretation presented by Paul Ricoeur. Narrative interviews are transcribed. A naïve understanding of the text is formulated from an initial reading. The text is then divided into meaning units that are condensed and abstracted to form sub-themes, themes and possibly main themes, which are compared with the naïve understanding for validation. Lastly the text is again read as a whole, the naïve understanding and the themes are reflected on in relation to the literature about the meaning of lived experience and a comprehensive understanding is formulated. The comprehensive understanding discloses new possibilities for being in the world. This world can be described as the prefigured life world of the interviewees as configured in the interview and refigured first in the researcher's interpretation and second in the interpretation of the readers of the research report. This may help the readers refigure their own life.
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            Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review.

            Many health professionals (HPs) express discomfort at having to broach the topic of prognosis, including limited life expectancy, and may withhold information or not disclose prognosis. A systematic review was conducted of 46 studies relating to truth-telling in discussing prognosis with patients with progressive, advanced life-limiting illnesses and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Register of Controlled Trials) up to November 2004, with handsearching of studies, as well as inclusion of studies satisfying selection criteria reported in 2005 by the authors. The reference lists of identified studies were hand-searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Results showed that although the majority of HPs believed that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. Reasons include perceived lack of training, stress, no time to attend to the patient's emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment. Studies suggest that patients can discuss the topic without it having a negative impact on them. Differences and similarities in findings from different cultures are explored.
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              Existential concerns among patients with cancer and interventions to meet them: an integrative literature review.

              An integrative literature review was undertaken to explore existential concerns among patients with cancer with respect to components, related concepts and targets of interventions. Comprehensive searches in MEDLINE, CINAHL, PsychINFO, Social Citation Index, SweMed+, Eurethics, NLM Gateway, Faculty of 1000 Medicine, Cochrane Library, EMBACE were undertaken. Each paper was read and classified according to design as descriptive qualitative, descriptive quantitative or interventional. Main themes, interventions and outcomes were identified. The searches yielded a total of 162 articles, of which 109 met inclusion criteria. Existential components from the qualitative studies were divided into two main themes: struggle to maintain self-identity and threats to self-identity. Quantitative studies mainly concerned relationships between existential concerns and other concepts. Interventions and assessed outcomes were consistent with components and relationships found in the descriptive studies. Relationships concerned physical and psychological domains; however, few interventions were evaluated against physical outcomes. No interventions applicable to everyday health-care practice were found. Interventions targeted and evaluated concepts related to existential concerns found in the descriptive studies. Gaps in research on existential concerns in patients with cancer include the need to clarify the concept; how patients' existential well-being may best be supported by health-care professionals in everyday practice; effects of existential interventions on physical symptoms; and stability of results of interventions.
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                Author and article information

                Contributors
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central
                1472-684X
                2014
                11 June 2014
                : 13
                : 28
                Affiliations
                [1 ]Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, Sweden, Box 457, Gothenburg SE- 405 30, Sweden
                [2 ]Sahlgrenska University Hospital, Per Dubbsgatan, Gothenburg SE- 413 45, Sweden
                [3 ]University of Gothenburg Centre for Person-Centred Care, Box 457, Gothenburg SE- 405 30, Sweden
                [4 ]Department of Health Studies, Faculty of Social Sciences, University of Stavanger, Stavanger 4036, Norway
                [5 ]Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden
                Article
                1472-684X-13-28
                10.1186/1472-684X-13-28
                4059734
                24936149
                19d7baf7-6a65-4d50-b49b-b85badc75770
                Copyright © 2014 Karlsson et al.; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited.

                History
                : 3 July 2013
                : 15 May 2014
                Categories
                Research Article

                Anesthesiology & Pain management
                existential uncertainty and existential certainty,life-world phenomenology,nursing,palliative care,personal growth,qualitative research,spirituality

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