This report presents the findings of a two-year qualitative study that examined experiences and understanding of epilepsy amongst South Asian communities in Bradford. The study also focused upon the role of families in providing support to persons with epilepsy, the use of traditional South Asian therapies, and views of service provision. The research was commissioned and funded by Epilepsy Action, and conducted by the Health Services Research Unit at St. Luke’s Hospital, Bradford NHS Trust. The study was undertaken to enable Epilepsy Action to develop more appropriate information and resource materials for individuals with epilepsy and their families. Recommendations have also been produced for practitioners and policy makers involved in planning and providing health care services.
The main aim of the study was to examine the experiences of South Asians’ with epilepsy in relation to their health needs and beliefs and the role of health professionals in providing appropriate information and accessible services. The specific aims were:
- to examine the experiences of epilepsy, its management and impact on people’s lives;
- to explore the understanding of the illness, health and religious beliefs and the use of traditional South Asian therapies; and
- to understand access to health services, to identify barriers and to examine information available.
Fieldwork for the study was conducted mainly in Bradford and partly in Leeds, both of which have sizeable South Asian populations. A sampling frame of persons with epilepsy over 18 years of age was compiled using data from the epilepsy register and hospital databases. The sample was divided by religious groupings (Muslims, Sikhs and Hindus). A total of 56 one-to-one interviews were undertaken with 30 people with epilepsy, 16 carers and 10 health professionals. In addition two focus groups were conducted with 16 people recruited from community centres. The framework approach was adopted to analyse the data.
Perceptions of epilepsy
The most commonly used term for epilepsy - regardless of ethnic group – was the word mirgee, which means ‘fit’ but has a very negative connotation. Common explanations shared across all groups for having epilepsy were stress, family history, physical trauma, and previous health problems. Some Muslims believed epilepsy was caused by spirit possession and many attributed it to ‘the will of Allah’, whereas some Hindus and Sikhs believed sins committed in a past life caused the condition. Community members added other explanations like consanguineous marriages. Some respondents felt that people from the wider community shunned them due to fear of ‘catching’ epilepsy. Others mentioned that the wider community saw people with epilepsy as having some kind of disability and therefore as being in some way devalued.