Abstract
BackgroundEach 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.MethodsWe 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.ResultsWe 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.ConclusionsThis 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.
Highlights
Each year over five million people develop chronic non-malignant pain and can experience healthcare as an adversarial struggle
We aimed to explore whether a synthesis of Qualitative Evidence Syntheses (QES) had the potential to add a conceptual level that was greater than the sum of its QES parts
It is not necessarily recommended for decision-making contexts such as guideline or policy recommendations. Our aims were both substantive and methodological: (1) to bring together QES that explored patients’ experience of living with non-malignant chronic 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 QES using the methods of meta-ethnography
Summary
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. The number of Qualitative Evidence Syntheses (QES) that aim to systematically search for and synthesise the findings from qualitative research is increasing. Hannes and colleagues demonstrate that the number of qualitative syntheses in 2008 had doubled within four years [3]. A few examples are: medicine taking [6], diabetes [7] antidepressants [8], chronic musculoskeletal pain [9] and chronic pelvic pain [10]
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