Understanding the Lived Experience of Chronic Pain: A Systematic Review and Synthesis of Qualitative Evidence Syntheses

Understanding the Lived Experience of Chronic Pain: A Systematic Review and Synthesis of Qualitative Evidence Syntheses

Background: Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom. Methods: Six bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives through two workshops. The output from these workshops helped inform the creation of twenty survey statements. Results: The research team identified and screened 1,323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to my self; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a two-week period in November 2021, and was completed by 1,219 people, largely confirming the above themes. Conclusion/implications: This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK, and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain, and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool.

### Competing Interest Statement

The authors have declared no competing interest.

### Funding Statement

This work is supported by an unrestricted educational grant from Pfizer, Inc.

### Author Declarations

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.


The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

This study received approval by the University of Dundee School Research Ethics Committee (SMED REC Number 21/97).

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.


I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).


I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.


All data produced in the present study are available upon reasonable request to the authors.

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