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      (In)Visible illness: A photovoice study of the lived experience of self-managing rheumatoid arthritis

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          Abstract

          Background

          Chronic illnesses, such as Rheumatoid Arthritis (RA), are a growing burden on health care systems worldwide. Self-management emphasises the patient’s central role in managing their illness. This is pertinent given the majority of care is provided by the individual themselves; yet how individuals make sense of self-management in everyday life is largely unseen.

          Objective

          The purpose of this study was to capture the strengths and concerns of individuals with RA in self-managing their illness, raise awareness of their lived experience and spark a dialogue among stakeholders.

          Methods

          A community-based participatory approach, Photovoice, was adopted. A purposive sample of participants were tasked with taking photographs to represent the challenges and solutions to living with RA. Group workshops and semi-structured interviews were conducted to facilitate reflection, dialogue and analysis. Data analysis followed Braun and Clarke’s thematic analysis. Public exhibitions were held throughout the Autumn of 2019.

          Results

          Eight women and three men (n = 11) across suburban and urban regions of Ireland were recruited (mean age 57 years, disease duration 4–21 years). Participants identified four main themes which reflected the lived experience of self-managing RA: (i) I’m Here but I’m Not, (ii) Visible Illness, (iii) Medicine in All its Forms, (iv) Mind Yourself. These themes captured the challenge of reduced agency, limited contribution and participation, and a complex relationship between visible and invisible illness. Solutions focused on improving psychological and emotional resilience, particularly through personal reflection and increased agency.

          Conclusions

          Our findings suggest that RA is experienced as a fluid relationship between states of masking and surfacing of illness shaped by contextual and situational factors. Photovoice was a highly effective tool to capture and communicate this complexity. Supporting increased agency among individuals with RA to control the (in)visibility of illness and disability can inform the development of future self-management support.

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          Most cited references 100

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          Using thematic analysis in psychology

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            Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

             A Tong,  P SAINSBURY,  J. Craig (2007)
            Qualitative research explores complex phenomena encountered by clinicians, health care providers, policy makers and consumers. Although partial checklists are available, no consolidated reporting framework exists for any type of qualitative design. To develop a checklist for explicit and comprehensive reporting of qualitative studies (in depth interviews and focus groups). We performed a comprehensive search in Cochrane and Campbell Protocols, Medline, CINAHL, systematic reviews of qualitative studies, author or reviewer guidelines of major medical journals and reference lists of relevant publications for existing checklists used to assess qualitative studies. Seventy-six items from 22 checklists were compiled into a comprehensive list. All items were grouped into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. Duplicate items and those that were ambiguous, too broadly defined and impractical to assess were removed. Items most frequently included in the checklists related to sampling method, setting for data collection, method of data collection, respondent validation of findings, method of recording data, description of the derivation of themes and inclusion of supporting quotations. We grouped all items into three domains: (i) research team and reflexivity, (ii) study design and (iii) data analysis and reporting. The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.
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              Self-management education: History, definition, outcomes, and mechanisms

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                Author and article information

                Contributors
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: ResourcesRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Role: ConceptualizationRole: InvestigationRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: Formal analysisRole: MethodologyRole: SupervisionRole: ValidationRole: Writing – review & editing
                Role: InvestigationRole: VisualizationRole: Writing – review & editing
                Role: Data curationRole: Formal analysisRole: VisualizationRole: Writing – review & editing
                Role: ConceptualizationRole: Formal analysisRole: MethodologyRole: SupervisionRole: ValidationRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS One
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                8 March 2021
                2021
                : 16
                : 3
                Affiliations
                [1 ] Centre for Interdisciplinary Research Education and Innovation in Health Systems (IRIS), School of Nursing, Midwifery and Health Systems, University College Dublin, Dublin, Ireland
                [2 ] School of Medicine and Medical Science, Conway Institute, University College Dublin, Dublin, Ireland
                [3 ] FLAME University, Pune, India
                [4 ] Independent Filmmaker, Dublin, Ireland
                University of Birmingham, UNITED KINGDOM
                Author notes

                Competing Interests: The authors have read the journal’s policy and declare the following competing interests: A Wellcome Trust Institutional Strategic Support Fund (ISSF) financed jointly by University College Dublin and the SFI-HRB-Wellcome Trust Biomedical Research Partnership provided support in the form of salaries for authors CD and SD. There are no patents, products in development or marketed products associated with this research to declare. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

                Article
                PONE-D-20-20019
                10.1371/journal.pone.0248151
                7939378
                33684123
                ebe50092-f43b-49b1-9860-00a3c562bcb4
                © 2021 Donnelly 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.

                Page count
                Figures: 15, Tables: 1, Pages: 32
                Product
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/100010269, Wellcome Trust;
                Award ID: 204844/Z/16/Z
                Award Recipient :
                Funding for this research was awarded to SD under a Wellcome Trust Institutional Strategic Support Fund (ISSF) which was financed jointly by University College Dublin and the SFI-HRB-Wellcome Trust Biomedical Research Partnership as part of a Medical Humanities and Social Science Collaboration Scheme (Grant number 204844/Z/16/Z). This fund provided support in the form of salaries for authors CD and SD, but did not have any additional role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The specific roles of these authors are articulated in the ‘author contributions’ section.
                Categories
                Research Article
                Medicine and Health Sciences
                Rheumatology
                Arthritis
                Rheumatoid Arthritis
                Medicine and Health Sciences
                Clinical Medicine
                Clinical Immunology
                Autoimmune Diseases
                Rheumatoid Arthritis
                Biology and Life Sciences
                Immunology
                Clinical Immunology
                Autoimmune Diseases
                Rheumatoid Arthritis
                Medicine and Health Sciences
                Immunology
                Clinical Immunology
                Autoimmune Diseases
                Rheumatoid Arthritis
                Medicine and Health Sciences
                Clinical Medicine
                Signs and Symptoms
                Pain
                Biology and Life Sciences
                Psychology
                Emotions
                Social Sciences
                Psychology
                Emotions
                Medicine and Health Sciences
                Medical Conditions
                Disabilities
                Biology and Life Sciences
                Neuroscience
                Cognitive Science
                Cognitive Psychology
                Social Cognition
                Sense of Agency
                Biology and Life Sciences
                Psychology
                Cognitive Psychology
                Social Cognition
                Sense of Agency
                Social Sciences
                Psychology
                Cognitive Psychology
                Social Cognition
                Sense of Agency
                Biology and Life Sciences
                Psychology
                Social Psychology
                Social Cognition
                Sense of Agency
                Social Sciences
                Psychology
                Social Psychology
                Social Cognition
                Sense of Agency
                Biology and Life Sciences
                Physiology
                Biological Locomotion
                Walking
                Biology and Life Sciences
                Psychology
                Emotions
                Fear
                Social Sciences
                Psychology
                Emotions
                Fear
                Physical Sciences
                Physics
                Classical Mechanics
                Reflection
                Custom metadata
                All data underlying the findings of the manuscript (e.g. interview transcripts is available from the Irish Qualitative Data Archive (IQDA) / Digital Repository of Ireland (DRI) for teaching and research purposes ( https://doi.org/10.7486/DRI.8c980c55x).

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