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Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses
BACKGROUND: Rheumatoid arthritis is an autoimmune disease that causes joint inflammation. It affects around 400,000 people in the UK and 1 million adults in the USA. Given the appropriate treatment, many can have relatively few symptoms. It is therefore important to understand what it is like to liv...
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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BioMed Central
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6390589/ https://www.ncbi.nlm.nih.gov/pubmed/30886993 http://dx.doi.org/10.1186/s41927-018-0049-0 |
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author | Toye, Fran Seers, Kate Barker, Karen Louise |
author_facet | Toye, Fran Seers, Kate Barker, Karen Louise |
author_sort | Toye, Fran |
collection | PubMed |
description | BACKGROUND: Rheumatoid arthritis is an autoimmune disease that causes joint inflammation. It affects around 400,000 people in the UK and 1 million adults in the USA. Given the appropriate treatment, many can have relatively few symptoms. It is therefore important to understand what it is like to live with rheumatoid arthritis and gain insight into peoples’ decisions about utilising healthcare. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients’ experience of living with rheumatoid arthritis and (2) develop a conceptual understanding of what it is like to live with rheumatoid arthritis. METHODS: We used the methods of mega-ethnography. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched four bibliographic databases from inception until September 2018 to identify qualitative evidence syntheses that explored patients’ experience of rheumatoid arthritis. RESULTS: We identified 373 qualitative evidence syntheses, removed 179 duplicates and screened 194 full text studies. We identified 42 qualitative evidence syntheses that explored the experience of pain or arthritis and 9 of these explored the experience of rheumatoid arthritis. We abstracted ideas into 10 conceptual categories: (1) rheumatoid arthritis is in control of my body (2) rheumatoid arthritis alters reciprocity; (3) rheumatoid arthritis is an emotional challenge; (4) rheumatoid arthritis disrupts my present and future self; (5) the challenge of balancing personal and work life; (6) I am trying to make sense of what is happening; (7) rheumatoid arthritis is variable and unpredictable; (8) rheumatoid arthritis is invisible; (9) I need a positive experience of healthcare, and (10) I need to reframe the situation. We developed a conceptual model underpinned by living life precariously with rheumatoid arthritis. CONCLUSIONS: This is the second mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Future research should consider the proliferation of qualitative evidence synthesis in order to avoid duplication of research effort. Our model for rheumatoid arthritis has some important clinical implications that might be transferable to other musculoskeletal conditions. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s41927-018-0049-0) contains supplementary material, which is available to authorized users. |
format | Online Article Text |
id | pubmed-6390589 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-63905892019-03-18 Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses Toye, Fran Seers, Kate Barker, Karen Louise BMC Rheumatol Research Article BACKGROUND: Rheumatoid arthritis is an autoimmune disease that causes joint inflammation. It affects around 400,000 people in the UK and 1 million adults in the USA. Given the appropriate treatment, many can have relatively few symptoms. It is therefore important to understand what it is like to live with rheumatoid arthritis and gain insight into peoples’ decisions about utilising healthcare. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients’ experience of living with rheumatoid arthritis and (2) develop a conceptual understanding of what it is like to live with rheumatoid arthritis. METHODS: We used the methods of mega-ethnography. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched four bibliographic databases from inception until September 2018 to identify qualitative evidence syntheses that explored patients’ experience of rheumatoid arthritis. RESULTS: We identified 373 qualitative evidence syntheses, removed 179 duplicates and screened 194 full text studies. We identified 42 qualitative evidence syntheses that explored the experience of pain or arthritis and 9 of these explored the experience of rheumatoid arthritis. We abstracted ideas into 10 conceptual categories: (1) rheumatoid arthritis is in control of my body (2) rheumatoid arthritis alters reciprocity; (3) rheumatoid arthritis is an emotional challenge; (4) rheumatoid arthritis disrupts my present and future self; (5) the challenge of balancing personal and work life; (6) I am trying to make sense of what is happening; (7) rheumatoid arthritis is variable and unpredictable; (8) rheumatoid arthritis is invisible; (9) I need a positive experience of healthcare, and (10) I need to reframe the situation. We developed a conceptual model underpinned by living life precariously with rheumatoid arthritis. CONCLUSIONS: This is the second mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Future research should consider the proliferation of qualitative evidence synthesis in order to avoid duplication of research effort. Our model for rheumatoid arthritis has some important clinical implications that might be transferable to other musculoskeletal conditions. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s41927-018-0049-0) contains supplementary material, which is available to authorized users. BioMed Central 2019-02-06 /pmc/articles/PMC6390589/ /pubmed/30886993 http://dx.doi.org/10.1186/s41927-018-0049-0 Text en © The Author(s) 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Research Article Toye, Fran Seers, Kate Barker, Karen Louise Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses |
title | Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses |
title_full | Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses |
title_fullStr | Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses |
title_full_unstemmed | Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses |
title_short | Living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses |
title_sort | living life precariously with rheumatoid arthritis - a mega-ethnography of nine qualitative evidence syntheses |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6390589/ https://www.ncbi.nlm.nih.gov/pubmed/30886993 http://dx.doi.org/10.1186/s41927-018-0049-0 |
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