South Asians and epilepsy: exploring health experiences, needs and beliefs of communities in the north of England.
OBJECTIVE
To examine the beliefs and experiences of South Asians with epilepsy and the extent of provision of appropriate information and accessible services for them by health professionals.


METHODS
Qualitative interviews with 30 South Asians with epilepsy, 16 carers and 10 health professionals. In addition, two focus groups were held with 16 South Asians without epilepsy recruited from community centers. The interview sample was divided by religious groupings (Hindus, Sikhs and Muslims). Fieldwork was conducted in Bradford and Leeds (England).


RESULTS
Beliefs that epilepsy is caused by spirit possession (Muslims) or attributable to sins committed in a past life (Sikhs and Hindus) were reported as being widely held among South Asians living both in the UK and the Indian subcontinent, although few informants themselves subscribed to such views. Compliance with conventional medication was high; however, those who experienced seizures most often were most likely to turn to traditional South Asian therapies. Most informants used both treatments simultaneously. The main issues regarding the provision of services were: lack of appropriate information and advice; language and communication barriers; problems in interaction with health professionals. Also discussed were the potential merits of attending support groups. Greatest dissatisfaction was expressed in relation to primary care, whereas the highest praise was reserved for specialist epilepsy nurses.


CONCLUSIONS
Our findings show both similarities and differences between participants' experiences, where gender, age or other aspects of personal biography can be as important as religion, culture or country of origin. Furthermore, the impact of being diagnosed with epilepsy can be exacerbated by structural impediments to accessing information and appropriate services.
Ismail
Hanif
H
Health Services Research Unit, Bradford Teaching Hospitals NHS Trust, St Lukes Hospital, Extension Block C, West Yorkshire, Bradford BD5 0NA, UK. hanif.ismail@bradfordhospitals.nhs.uk
Wright
John
J
Rhodes
Penny
P
Small
Neil
N
Jacoby
Ann
A
D000293:Adolescent; D000328:Adult; D000368:Aged; D044466:Asian People; D001294:Attitude to Health; D003469:Culture; D004739:England / Q000453:epidemiology / Q000208:ethnology; D004827:Epilepsy / Q000208:ethnology / Q000523:psychology*; D005260:Female; D017144:Focus Groups / Q000379:methods; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006801:Humans; D007407:Interviews as Topic / Q000379:methods; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care; D012111:Residence Characteristics; D012944:Social Support