Perceptions, understandings and experiences of cluster headache patients in the north of England: a qualitative study

Background: Very few qualitative studies on cluster headache have been conducted. As a result we have little in-depth understanding of the perceptions and experiences of cluster headache patients and the health professionals who treat them. With this research we aim to rectify that gap.

Aim: The main objective of the overall project is to gain insight into the perceptions, experiences and understandings of cluster headache from the perspective of three key stakeholder groups: the cluster headache patients, GPs and neurologists. Here, we present the findings of the interview study with cluster headache patients.

Method: A qualitative study using semi-structured interviews with cluster headache patients. A systematic qualitative methodology is applied to the transcribed interviews (n = 30). The data are analysed using grounded theory to provide a systematic approach to coding. The following stages of analysis are followed: 1) line-by-line coding; 2) focused coding; 3) axial coding and 4) theoretical coding.

Result: Our findings provide an explanatory framework for patients’ views, experiences and understandings of cluster headache. The main themes are: early detection and diagnosis of cluster headache; effective treatment of cluster headache and the management of cluster headache in primary and secondary care.

Conclusion: This research contributes to our understanding of the social context of cluster headache sufferers and it sheds new light on the public and professional responses to cluster headache.