Help-seeking patterns for children with epilepsy in rural India: implications for service delivery.

Abstract

Most people in the world with epilepsy are untreated with antiepileptic drugs (AEDs). In some developing countries, this is because treatment facilities are unavailable or difficult to access. It has even been suggested that indigenous health systems threaten the prospect of the global control of epilepsy with AEDs. We have investigated patterns and costs of help seeking for children with epilepsy in a region of rural India where only 12% of children with epilepsy were in treatment. Our objective was to find out (a) whom families had consulted; (b) if nonconsulting families differed in demographic or child medical factors; (c) if indigenous treatment was taken, exclusive of allopathic treatment; and (d) the direct and indirect cost of various providers. We conducted a cross-sectional interview study in a community-based program for childhood epilepsy in rural West Bengal, India. We interviewed parents of 85 children aged 2 to 18 years with untreated epilepsy who had entered a clinical trial of AEDs during 1995 through 1996. Eighty percent of families had sought some help in the past: 62% with an allopathic practitioner, 44% with traditional practitioners. Primary health centres (PHCs) and quacks were not popular. Twenty-four percent of families never sought help of any kind, and this was unassociated with sex, income, maternal literacy, or medical variables. There was evidence of both exclusivity and pluralism: 42% of families first consulting allopathic practitioners also visited traditional practitioners, whereas 30% of families first consulting traditional practitioners also went to allopathic practitioners. One visit to a physician cost a median of 9-13% of monthly income and 5-12 person-hours; the cost of visiting indigenous providers was negligible. Most families sought some form of help and were motivated to spend large amounts of money and time for allopathic treatments from qualified practitioners. The typical cost of allopathic treatment was unsustainable in the long term. Medical pluralism is common and does not adversely influence use of allopathic treatment. The phenomenon of nonconsulting merits further study. Traditional practitioners play a complementary role and might become involved in community treatment programs. Low-cost, local treatment is essential to the public health control of epilepsy.