Dataset Information

A mega-ethnography of eleven qualitative evidence syntheses exploring the experience of living with chronic non-malignant pain.

ABSTRACT:

Background

Each year over five million people develop chronic non-malignant pain and can experience healthcare as an adversarial struggle. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients' experience of living with chronic non-malignant pain and develop conceptual understanding of what it is like to live with chronic non-malignant pain for improved healthcare; (2) to undertake the first mega-ethnography of qualitative evidence syntheses using the methods of meta-ethnography.

Methods

We used the seven stages of meta-ethnography refined for large studies. The innovation of mega-ethnography is to use conceptual findings from qualitative evidence syntheses as primary data. We searched 7 bibliographic databases from inception until February 2016 to identify qualitative evidence syntheses that explored patients' experience of living with chronic non-malignant pain.

Results

We identified 82 potential studies from 556 titles, screened 34 full text articles and included 11 qualitative evidence syntheses synthesising a total of 187 qualitative studies reporting more than 5000 international participants living with chronic pain. We abstracted concepts into 7 conceptual categories: (1) my life is impoverished and confined; (2) struggling against my body to be me; (3) the quest for the diagnostic 'holy grail'; (4) lost personal credibility; (5) trying to keep up appearances; (6) need to be treated with dignity; and (7) deciding to end the quest for the grail is not easy. Each conceptual category was supported by at least 7 of the 11 qualitative evidence syntheses.

Conclusions

This is the first mega-ethnography, or synthesis of qualitative evidence syntheses using the methods of meta-ethnography. Findings help us to understand that the decision to end the quest for a diagnosis can leave patients feeling vulnerable and this may contribute to the adversarial nature of the clinical encounter. This knowledge demonstrates that treating a patient with a sense that they are worthy of care and hearing their story is not an adjunct to, but integral to health care.

SUBMITTER: Toye F

PROVIDER: S-EPMC5540410 | biostudies-literature | 2017 Aug

REPOSITORIES: biostudies-literature

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Publications

A mega-ethnography of eleven qualitative evidence syntheses exploring the experience of living with chronic non-malignant pain.

Toye Fran F Seers Kate K Hannink Erin E Barker Karen K

BMC medical research methodology 20170801 1

<h4>Background</h4>Each year over five million people develop chronic non-malignant pain and can experience healthcare as an adversarial struggle. The aims of this study were: (1) to bring together qualitative evidence syntheses that explore patients' experience of living with chronic non-malignant pain and develop conceptual understanding of what it is like to live with chronic non-malignant pain for improved healthcare; (2) to undertake the first mega-ethnography of qualitative evidence synthe ...[more]

PMID: 28764666

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Project 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.

Project description:OBJECTIVES:To investigate the experience of living with patellofemoral pain (PFP). DESIGN:Qualitative study design using semistructured interviews and analysed thematically using the guidelines set out by Braun and Clarke. SETTING:A National Health Service physiotherapy clinic within a large UK teaching hospital. PARTICIPANTS:A convenience sample of 10 participants, aged between 18 and 40 years, with a diagnosis of PFP and on a physiotherapy waiting list, prior to starting physiotherapy. RESULTS:Participants offered rich and detailed accounts of the impact and lived experience of PFP, including loss of physical and functional ability; loss of self-identity; pain-related confusion and difficulty making sense of their pain; pain-related fear, including fear-avoidance and 'damage' beliefs; inappropriate coping strategies and fear of the future. The five major themes that emerged from the data were: (1) impact on self; (2) uncertainty, confusion and sense making; (3) exercise and activity beliefs; (4) behavioural coping strategies and (5) expectations of the future. CONCLUSIONS:These findings offer an insight into the lived experience of individuals with PFP. Previous literature has focused on pain and biomechanics, rather than the individual experience, attached meanings and any wider context within a sociocultural perspective. Our findings suggest that future research is warranted into biopsychosocial targeted interventions aimed at the beliefs and pain-related fear for people with PFP. The current consensus that best-evidence treatments consisting of hip and knee strengthening may not be adequate to address the fears and beliefs identified in the current study. Further qualitative research may be warranted on the impact and interpretation of medical terminology commonly used with this patient group, for example, 'weakness' and 'patellar mal-tracking' and its impact and interpretation by patients. TRIAL REGISTRATION NUMBER:ISRCTN35272486; Pre-results.

Dataset Information

A mega-ethnography of eleven qualitative evidence syntheses exploring the experience of living with chronic non-malignant pain.

Background

Methods

Results

Conclusions

Publications

A mega-ethnography of eleven qualitative evidence syntheses exploring the experience of living with chronic non-malignant pain.

Similar Datasets

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