An exploration into the lifeworld of patients with cluster headache in South Africa

Abstract

Cluster headache is an excruciatingly painful condition that greatly affects the lived experience of those who suffer from it. There is a general paucity of information on the condition, and with little literature about headaches in the African continent; this is a novel investigation into the experience of cluster headaches within the South African context using an explorative and qualitative approach. Aim: The aim of this study was to describe and reflect on the lifeworld of individuals’ with cluster headaches within a South African context. Methodology: the study was a qualitative study exploring the lifeworld and experiences of eight South Africans with cluster headache. Data were collected using in-depth semi-structured interviews. Transcriptions were systematically reviewed to find common themes and subthemes using appropriate qualitative methodology. Results: The participants were equally distributed with regard to gender; there were four male and four female participants within an age range of 20 to 62 years. Of the eight participants, six were white, one Indian and one black. All but one patient had the episodic sub-type. Only one participant utilised the public healthcare system. Five main themes emerged: a) the inexplicable intensity of the pain, b) the reality of a disease-experience outside of head pain c) anxiety as a complexly recurring reaction, d) the perceptions of healthcare sought-out, and e) the value of a diagnostic label. Conclusion: The interpretation of results revealed that individuals with cluster headache perceived to have a massive impact on most aspects of their life, with emotional and psychological ramifications being significant. These experiences were exacerbated by misdiagnosis and mismanagement, as well as the perception of the impacts of a variety of stigmas. Cluster headache individuals in this cohort expressed a desperate need for empathetic care alongside more effective and accessible treatments and desire for more awareness of the condition within the medical field.