Perceptions and experiences of epilepsy among patients from black ethnic groups in South London

Abstract

OBJECTIVE: The National Institute of Clinical Excellence suggested black ethnic minorities with epilepsy have different cultural, communicative and health-care needs. However, little is known about these despite increasing migration of black African and Caribbean people to Europe. This study aims to explore perceptions and experiences of epilepsy among black African and Caribbean people in South London. METHODS: Semi-structured interviews were undertaken with 11 participants, to examine their beliefs and perceptions of living with epilepsy. Interviews were recorded, transcribed, codes generated and thematic analysis undertaken. RESULTS: African participants described supernatural causes for epilepsy and experienced considerable stigma whereas Caribbean participants described epilepsy as a 'normal illness'. However, both African and Caribbean participants experienced social restrictions arising from their epilepsy. CONCLUSIONS: The findings of higher levels of perceived stigma and social restriction seen in African participants may be a continuation of beliefs reported in participants' country of origin. There is also evidence that views regarding epilepsy transition through generations vary depending on place of birth. Practical Implications Health-care professionals need to be aware of and engage with the particular beliefs and concerns of black African and Caribbean people to achieve equity in health outcomes.