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      Coping Well with Advanced Cancer: A Serial Qualitative Interview Study with Patients and Family Carers

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          Abstract

          Objectives

          To understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers.

          Design

          Qualitative serial (4–12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development.

          Participants

          26 people with advanced (stage 3–4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers.

          Setting

          Participants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013.

          Results

          45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective ‘everyday’, non-clinical coping strategies.

          Conclusions

          Our findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples’ own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.

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          Most cited references33

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          What is the effect of peer support on diabetes outcomes in adults? A systematic review.

          There is increasing interest in the role that peers may play to support positive health behaviours in diabetes, but there is limited evidence to inform policy and practice. The aim of this study was to systematically review evidence of the impact and effectiveness of peer support in adults living with diabetes. We searched the Cochrane Library, MEDLINE, PubMed, EMBASE and CINHAL for the period 1966-2011, together with reference lists of articles for eligible studies. Data were synthesized in a narrative review. Twenty-five studies, including fourteen randomized, controlled or comparative trials, met the inclusion criteria. There was considerable heterogeneity in the design, setting, outcomes and measurement tools. Peer support was associated with statistically significant improvements in glycaemic control (three out of 14 trials), blood pressure (one out of four trials), cholesterol (one out of six trials), BMI/weight (two out of seven trials), physical activity (two out of five trials), self-efficacy (two out of three trials), depression (four out of six trials) and perceived social support (two out of two trials). No consistent pattern of effect related to any model of peer support emerged. Peer support appears to benefit some adults living with diabetes, but the evidence is too limited and inconsistent to support firm recommendations. There remains a need for further well-designed evaluations of its effectiveness and impact. Key questions remain over its suitability to the needs of particular individuals, populations and settings, how best to implement its specific components and the sustainability of its effects. © 2012 The Authors. Diabetic Medicine © 2012 Diabetes UK.
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            Systematic Review on Internet Support Groups (ISGs) and Depression (1): Do ISGs Reduce Depressive Symptoms?

            Background Internet support groups (ISGs) enable individuals with specific health problems to readily communicate online. Peer support has been postulated to improve mental health, including depression, through the provision of social support. Given the growing role of ISGs for both users with depression and those with a physical disorder, there is a need to evaluate the evidence concerning the efficacy of ISGs in reducing depressive symptoms. Objective The objective was to systematically review the available evidence concerning the effect of ISGs on depressive symptoms. Method Three databases (PubMed, PsycINFO, Cochrane) were searched using over 150 search terms extracted from relevant papers, abstracts, and a thesaurus. Papers were included if they (1) employed an online peer-to-peer support group, (2) incorporated a depression outcome, and (3) reported quantitative data. Studies included both stand-alone ISGs and those used in the context of a complex multi-component intervention. All trials were coded for quality. Results Thirty-one papers (involving 28 trials) satisfied the inclusion criteria from an initial pool of 12,692 abstracts. Sixteen trials used either a single-component intervention, a design in which non-ISG components were controlled, or a cross-sectional analysis, of which 10 (62.5%) reported a positive effect of the ISG on depressive symptoms. However, only two (20%) of these studies employed a control group. Only two studies investigated the efficacy of a depression ISG and neither employed a control group. Studies with lower design quality tended to be associated with more positive outcomes (P = .07). Overall, studies of breast cancer ISGs were more likely to report a reduction in depressive symptoms than studies of other ISG types (Fisher P = .02), but it is possible that this finding was due to confounding design factors rather than the nature of the ISG. Conclusions There is a paucity of high-quality evidence concerning the efficacy or effectiveness of ISGs for depression. There is an urgent need to conduct high-quality randomized controlled trials of the efficacy of depression ISGs to inform the practice of consumers, practitioners, policy makers, and other relevant users and providers of online support groups.
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              Illness perceptions and coping in physical health conditions: A meta-analysis.

              There is a considerable body of research linking elements of Leventhal's Common Sense Model (CSM) to emotional well-being/distress outcomes among people with physical illness. The present study aims to consolidate this literature and examine the evidence for the role of coping strategies within this literature.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                20 January 2017
                2017
                : 12
                : 1
                : e0169071
                Affiliations
                [1 ]International Observatory on End of Life Care, Lancaster University, Bailrigg, Lancaster, United Kingdom
                [2 ]The School of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, United Kingdom
                [3 ]Clatterbridge Cancer Centre NHS Foundation Trust, Wirral, United Kingdom
                [4 ]Faculty of Health Sciences, University of Southampton, Southampton, United Kingdom
                [5 ]User representative, Liverpool, United Kingdom
                [6 ]Institute of Psychology, Health and Society, University of Liverpool, Liverpool, United Kingdom
                University of Stirling, UNITED KINGDOM
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                • Conceptualization: CW LA PL LC MLW GG.

                • Data curation: CW DR.

                • Formal analysis: CW DR.

                • Funding acquisition: CW LA PL LC MLW GG.

                • Investigation: CW DR LA.

                • Methodology: CW LA PL LC MLW GG.

                • Project administration: CW.

                • Writing – original draft: CW DR.

                • Writing – review & editing: CW DR LA PL LC MLW GG.

                Author information
                http://orcid.org/0000-0002-4531-8608
                Article
                PONE-D-16-14898
                10.1371/journal.pone.0169071
                5249149
                28107352
                e1484551-10a7-4406-97c1-1c49462fcef4
                © 2017 Walshe et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 12 April 2016
                : 12 December 2016
                Page count
                Figures: 0, Tables: 3, Pages: 25
                Funding
                Funded by: Dimbleby Cancer Care
                Award Recipient :
                This research was funded by Dimbleby Cancer Care http://www.dimblebycancercare.org/research/funded-research-projects-past-and-present through a grant awarded to CW, LA, LC, PL, MLW and GG. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Medicine and Health Sciences
                Diagnostic Medicine
                Cancer Detection and Diagnosis
                Medicine and Health Sciences
                Oncology
                Cancer Detection and Diagnosis
                Research and Analysis Methods
                Research Design
                Qualitative Studies
                Biology and Life Sciences
                Neuroscience
                Cognitive Science
                Cognitive Psychology
                Learning
                Human Learning
                Biology and Life Sciences
                Psychology
                Cognitive Psychology
                Learning
                Human Learning
                Social Sciences
                Psychology
                Cognitive Psychology
                Learning
                Human Learning
                Biology and Life Sciences
                Neuroscience
                Learning and Memory
                Learning
                Human Learning
                Social Sciences
                Sociology
                Communications
                Social Communication
                Biology and Life Sciences
                Psychology
                Emotions
                Anxiety
                Social Sciences
                Psychology
                Emotions
                Anxiety
                Social Sciences
                Sociology
                Communications
                Medicine and Health Sciences
                Health Care
                Palliative Care
                Medicine and Health Sciences
                Mental Health and Psychiatry
                Mood Disorders
                Depression
                Custom metadata
                The written consent given by participants at the time of data collection did not give permission for data sharing through public repositories. Permission was only granted for the use of suitably anonymised data extracts, as are used in this publication. Access to data may be requested by contacting c.walshe@ 123456lancaster.ac.uk .

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