The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature
Open accessAbstract
OBJECTIVE: To systematically review the qualitative literature of the lived experience of people with a chronic headache disorder. BACKGROUND: Chronic headaches affect 3%-4% of the population. The most common chronic headache disorders are chronic migraine, chronic tension-type headache and medication overuse headache. We present a systematic review and meta-ethnographic synthesis of the lived experience of people with chronic headache. METHODS: We searched seven electronic databases, hand-searched nine journals and used a modified Critical Appraisal Skills Programme checklist to appraise study quality. Following thematic analysis we synthesised the data using a meta-ethnographic approach. RESULTS: We identified 3586 unique citations; full texts were examined for 86 studies and 4 were included in the review. Included studies differed in their foci: exploring, patient-centred outcomes, chronic headache as a socially invisible disease, psychological processes mediating impaired quality of life, and the process of medication overuse. Initial thematic analysis and subsequent synthesis gave three overarching themes: 'headache as a driver of behaviour' (directly and indirectly), 'the spectre of headache' and 'strained relationships'. CONCLUSION: This meta-synthesis of published qualitative evidence demonstrates that chronic headaches have a profound effect on people's lives, showing similarities with other pain conditions. There were insufficient data to explore the similarities and differences between different chronic headache disorders.
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Limited qualitative data indicate that chronic headache disorders can directly and indirectly drive behaviour: that people live with the 'spectre of headache' and that headaches lead to strained relationships.
“Limited qualitative data indicate that chronic headache disorders can directly and indirectly drive behaviour: that people live with the ‘spectre of headache’ (an array of concerns people with chronic headaches have to take into account when forward planning) and that headaches lead to strained relationships.13”
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Patel, S., Achana, F., Carnes, D., Eldridge, S., Ellard, D. R., Griffiths, F., Haywood, K., Hee, S. W., Mistry, D., Mistry, H., et al. (2020) · BMJ Open · doi:10.1136/bmjopen-2019-033520 · Cited by 24 · see citing works
“13 20 For this trial, it is important that we are able to define our participants’ headache type, or types, accurately and exclude those with non-eligible headache types.”
Self-citationon behalf of the CHESS team, White, K., Potter, R., Patel, S., Nichols, V. P., Haywood, K. L., Hee, S. W., Mistry, D., Carnes, D., Taylor, S. J. C., et al. (2019) · BMC Medical Research Methodology · doi:10.1186/s12874-019-0672-5 · Cited by 18 · see citing works
Self-citation
- Authors
- Nichols, V. P., Ellard, D. R., Griffiths, F. E., Kamal, A., Underwood, M., & Taylor, S. J. C.
- Affiliations
- University of Warwick (GB)
- Queen Mary University of London (GB)
- Corresponding author
- Nichols, Vivien P
- ORCID
- Venue
- BMJ Open
- Publisher
- BMJ
- Published
- 2017-12
- Volume
- 7
- Issue
- 12
- Pages
- e019929
- ISSN
- 2044-6055 (ISSN-L)
- PMC
- PMC5778309
- OpenAlex
- W2774511170
- Cited by
- 73
- References
- 45
- Citations by year
- 2026: 2 · 2025: 8 · 2024: 11 · 2023: 20 · 2022: 9 · 2021: 7 · 2020: 5 · 2019: 8 · 2018: 3
- FWCI
- 0.66
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- cc-by
- Locations
- BMJ Open (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Warwick Research Archive Portal (University of Warwick) (acceptedVersion)
- Minerva Access (University of Melbourne) (submittedVersion, cc-by)
- Queen Mary Research Online (Queen Mary University of London) (submittedVersion, cc-by)
- Funders
- Health Technology Assessment Programme
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Migraine and Headache Studies
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Health Sciences › Medicine › Epidemiology › Traumatic Brain Injury Research
- Keywords
- chronic headache, lived experience, chronic migraine, chronic tension-type headache, medication overuse headache, quality of life, psychological impact, patient-centered outcomes, behavior change
- MeSH terms
- Analgesics, Attitude to Health, Humans, Interpersonal Relations, Quality of Life, Headache Disorders, Qualitative Research, Illness Behavior
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