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      Conceptual framework for living with and beyond cancer: A systematic review and narrative synthesis


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          The concept of living with and beyond cancer is now emerging in policy and literature. Rather than viewing this notion simply as a linear timeline, developing an agreed understanding of the lived experience of people affected by cancer will aid the development of person‐centred models of care.


          A systematic review was conducted. The review question was “What does the term ‘living with and beyond cancer’ mean to people affected by cancer?” The protocol for the review was preregistered in the PROSPERO database (PROSPERO CRD42017059860). All included studies were qualitative, so narrative synthesis was used to integrate descriptions and definitions of living with and beyond cancer into an empirically based conceptual framework.


          Out of 2345 papers that were identified and 180 that were reviewed, a total of 73 papers were included. The synthesis yielded three interlinked themes: Adversity (realising cancer), Restoration (readjusting life with cancer), and Compatibility (reconciling cancer), resulting in the ARC framework.


          Three themes describe the experience of living with and beyond cancer: adversity, restoration, and compatibility. The ARC framework provides an empirically informed grounding for future research and practice in supportive cancer care for this population.

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          Most cited references 67

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          Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects.

          Research concerning distress in couples coping with cancer was integrated using meta-analysis and narrative critical appraisal. Individual levels of distress were determined more by gender than by the role of being the person with cancer versus that person's partner. That is, women reported consistently more distress than men regardless of their role (standardized mean difference = 0.31). The association between patient and partner distress within couples was only moderate (r = .29) but is sufficient to warrant further consideration of the notion that these couples react as an emotional system rather than as individuals. It is noteworthy that this association is not moderated by gender. With a general lack of comparison groups, the question of how much distress can be ascribed to the cancer experience cannot be answered decisively; elevations in distress are probably modest. We critically discuss these results, identify important unanswered questions, and indicate directions for future research. Attention needs to be directed toward factors other than cancer as direct influences of distress in these couples and to mediators and moderators of the cancer experience. Copyright (c) 2008 APA.
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            Loss of self: a fundamental form of suffering in the chronically ill.

             K Charmaz (1983)
            Physical pain, psychological distress and the deleterious effects of medical procedures all cause the chronically ill to suffer as they experience their illnesses. However, a narrow medicalized view of suffering, solely defined as physical discomfort, ignores or minimizes the broader significance of the suffering experienced by debilitated chronically ill adults. A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones. As a result of their illnesses, these individuals suffer from (1) leading restricted lives, (2) experiencing social isolation, (3) being discredited and (4) burdening others. Each of these four scores of suffering is analysed in relation to its effects on the consciousness of the ill person. The data are drawn from a qualitative study of 57 chronically ill persons with varied diagnoses.
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              Building a Conceptual Framework: Philosophy, Definitions, and Procedure


                Author and article information

                John Wiley and Sons Inc. (Hoboken )
                25 March 2019
                May 2019
                : 28
                : 5 ( doiID: 10.1002/pon.v28.5 )
                : 948-959
                [ 1 ] Department of Surgery, Cardiovascular and Cancer Imperial College Healthcare NHS Trust London UK
                [ 2 ] Department of Surgery & Cancer, Faculty of Medicine Imperial College London London UK
                [ 3 ] Public Health and Primary Care University of Cambridge, Strangeways Research Laboratory Cambridge UK
                [ 4 ] Department of Life Sciences Brunel University London London UK
                Author notes
                [* ] Correspondence

                Clair Le Boutillier, Department of Surgery, Cardiovascular and Cancer, Imperial College Healthcare NHS Trust, London W2 1NY, UK.

                Email: clair.le_boutillier@ 123456kcl.ac.uk


                Present address: Clair Le Boutillier, Department of Health Service & Population Research, Institute of Psychiatry, Psychology & Neuroscience, King's College London, PO26 The David Goldberg Centre, De Crespigny Park, London, SE5 8AF, UK

                PON5046 PON-18-0591.R3
                © 2019 The Authors. Psycho‐Oncology Published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                Page count
                Figures: 1, Tables: 1, Pages: 12, Words: 6318
                Funded by: Macmillan Cancer Support
                Award ID: N/A
                Custom metadata
                May 2019
                Converter:WILEY_ML3GV2_TO_NLMPMC version:5.6.5 mode:remove_FC converted:26.06.2019


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