A qualitative study of migraine involving patient researchers.

Background: Migraine is poorly managed in primary care despite a high level of morbidity. The majority of sufferers use non-prescription medications and are reluctant to seek help but the reasons for this are not understood.

Aim: The aim of this study was to develop a research partnership between migraine sufferers and healthcare professionals to synthesise tacit and explicit knowledge in the area. Building upon this partnership, a further aim was to explore what it is to suffer with migraine from patients' perspectives in order to inform health service delivery.

Design: Qualitative interview study involving healthcare professionals and patient researchers.

Setting: A purposeful sample of eight migraine sufferers who had attended a local intermediate care headache clinic.

Method: A consensual qualitative approach.

Results: Migraine had a high and unrecognised impact on quality of life. 'Handling the beast' was a central metaphor that resonated with the experience of all sufferers who sought to control their problem in different ways. Three major themes were identified: making sense of their problem; actively doing something about it either through self-help or professional advice; being resigned to it.

Conclusion: Despite a significant impact on the quality of life of migraine sufferers and their families, their needs remain largely unmet. Useful insights can be obtained when patients and professionals work together in true partnership but the time and effort involved should not be underestimated. Further research is needed to identify why there are major deficiencies in delivering care in this common problem.