http://doi.org/10.33698/NRF0022 Amarjeet Singh, Arvinder Kaur Arora
Abstract: A community based epidemiological study on epilepsy was conducted in rural North India to estimate the extent of the problem and to study the KAP of relatives of epileptics regarding epilepsy. A female social worker interviewed the adult relatives of the epileptics. Supernatural causation was ascribed for epilepsy by 39% respondents. Frothing at mouth (61%) and shaking of limbs were the identification features quoted by them. Majority (84%) recommended government doctor for treatment of epileptics. Epilepsy was told as incurable by some (12%) while 17% said it was hereditary. Majority (66%) opposed marriage of epileptics. Most of them (85%) advised restriction in activities of epileptics to avoid injuries.
Key words: Epilepsy, K.A.P., neurological disorder.
Dr. Amarjeet Singh
Community Medicine PGIMER, Chandigarh, India.
Epilepsy is a common neurological disorder with severe personal, familial and social impact.’ Because of the nature of the symptomatology of the disease involving fits and loss of consciousness, people usually ascribe supernatural causation to it and indulge in a variety of management practices for such symptoms.’ It is important to know the details of such practices and about knowledge and attitude of the general public about epilepsy because many of these practices are potentially harmful to the patient and need to be corrected.
A study of epidemiology of epilepsy was conducted in a rural area of North India to estimate the extent of the problem and to study the knowledge, attitude and practices (KAP)of the patients’ relatives regarding epilepsy.3 Present report deals with K.A.P. of the study population towards epilepsy.
Materials and methods
A female social worker was selected for the study. She was trained in interviewing techniques. The study was conducted in the catchment area of a primary health centre in North India (40 villages; population 30000). The medical officer and the health workers of the health centre, traditional birth attendants and primary health care workers of the area were contacted to elicit details on cases with history of seizures in their area. On the basis of this information a village wise tentative list of 171 suspected epilepsy cases was made. The cases were discussed with a neurologist at PGI Chandigarh. On the basis of history and later examination at PHC by the neurologist 45 cases were excluded.
These villages were then visited one by one by the social worker. The listed cases were located and were interviewed. On reaching a house, head of the family was told about the purpose of the survey and then the existence of the epileptic case in the family was verified. Adult cases themselves or parents (in case of paediatric cases) were interviewed to get further details. Each interview on an average lasted for 30 minutes. The details were noted on a pretested semi-structured interview schedule. It had details on socio-demographic data, history of seizure, age at onset of seizures, number of seizures in last year, and family history, past history, treatment and referral. Details were also sought whether the case had incontinence, frothing at mouth, amnesia, unconsciousness, speech defect. In addition an adult member/parents in the families of the epileptics were interviewed to elicit their knowledge, attitude and practice regarding etiology, identification, social impact and management of epilepsy. A separate questionnaire was used for this purpose.
In all, 121(96%) respondents answered the questions of K.A.P. regarding epilepsy. Rest five could not comprehend the questions properly. Respondents’ views on various aspects of epilepsy are described below:-
Cause of epilepsy
Eighteen (15%) of the respondents said that they were not aware about the cause of epilepsy. Forty seven (39%) ascribed supernatural etiology of epilepsy, while 23(19%) mentioned heat, weakness/blood pressure, 7(6%) mentioned tension, and 6(5%) mentioned head injury as the cause of epilepsy. Other etiological factors cited were-fever (7), fear (5), gas trouble (3), physical weakness (3), headache, cold/cough, looking at mirror, passing urine near some graveyard/ holy place, hiccups, consuming green chilly/ tobacco in childhood. Some (10) respondents told that fits could be precipitated by the sight of fire/water or due to other internal defects.
Identification features of epilepsy patients
Ten (8.3%) respondent did not know how to identify the epileptic patients. Frothing at mouth (74, 61.2%) and shaking of limbs (23, 19%) during seizures was the most quoted identification features for epilepsy. Other typical features of epileptic patients enumerated by the respondents were -precipitation of seizures near water or fire (18, 15%), up rolling of eye balls (5), clenching of teeth (1), nasal discharge (1), unconsciousness (1), a fit precipitated by sound (1 )/exposure to heat or sun (1) or use of copper vessel (1).
Where should such cases be treated
Fourteen (11.6%) cases did not know where the epileptics be referred/ treated. Majority (101, 84%) said that such patients should be taken to a government doctor. Seven (6%) told about village doctor while 3 said that prayers/workshop would help such cases. One respondent said that no treatment was needed.
Curability of epilepsy
Many (43, 36%) respondents said that they did not know whether epilepsy was curable or not. Fourteen (12%) said that epilepsy was incurable while 6 said that it was curable to some extent. Forty eight (40%) respondents said that epilepsy was curable while 10(8%) said that the effect of treatment lasted as long as one took medicine.
Is epilepsy hereditary
Thirty Five (29%) respondents said that they did not know whether the disease was hereditary or not. More than half (66, 55%) said that it was not hereditary while 20(17%) said that it was hereditary.
Marriage of epileptics
Majority (77, 64%) said that epileptics should not marry while 34(28%) said that such patients could marry. Ten respondents (8%) said that they did not know whether epileptics should marry or not.
Normal life for epileptics
Sixty three respondents (52%) did not know whether epileptics would lead normal life or not, while 35(29%) said that such patients could not lead normal life even if they are educated. Twenty three (19%) respondents said that with proper education epileptics could lead normal life.
Risk of injury or death to epileptics from routine activities
Nine respondents (7%) said that they did not know whether the epileptics had any risk in routine life. Len (8.3%) said that routine life does not involve any risk for epilepsy patients. Majority (103, 85%) said that epileptics should not go for activities like swimming or driving as it was risky for them.
Thirty one (25.6%) told about risk from fire to the epileptics. Other risky activities told for epileptics were -going near the well (1), in jungle (1), going anywhere (5), handling machines (1), looking at mirror (1), doing anything (2), eating oily things (1). Four respondents were equivocal and said that there may or may not be any risk to epileptics in routine life.
Friendship with epileptics
Six respondents said that they did not know whether they would like to be friend with epileptics or not. Majority (94, 78%) said that they had no objection to have friendship with the epileptics. Rest did not respond to this question.
Action to be taken if someone has a ‘seizure’ before you
Eight respondents (6.6%) said that they did not know what should be done if a patients had seizures in their presence. Eight said that they would do nothing while 17(14%) said that they would lay down the patient. More than half i.e. 68(56.2%) said that they would put something between the teeth of the patient while 24(20%) said that the nostril of the patient should be closed. Eight said that they would seek medical help for the patient while 20(16.5%) said that water should be put in patient’s mouth. Other measures advocated were –sprinkling water on patient’s face (3), putting milk in the mouth (2) forcing patient to smell leather shoes (7), massaging sole and palm with oil (5), call relatives (2), rub keys on the sole (1), restrain movements physically (1). Four persons said that seizures would stop on its own and nothing should be done.
Occurrence of involuntary movements during seizures at an unpredictable time and place in patients of epilepsy evokes a Peculiar reaction to the disease and to the patient among the society in general, People usually dread this disease and have peculiar notions about various aspects of epilepsyitsaetiology, curability, management practices and social aspects, Some of such features are reflected in our study results.
Like our study, many authors have documented the belief of general public in supernatural causation of epilepsy.1,24-6Typicaldiagnostic features of epilepsy patients as told by respondents were frothing at mouth during fits and precipitation of fits near water or fire. Majority of people had faith in government hospitals as a place where epileptics could get treatment. Only 3 respondents advocated worship as a remedy. This is in contrast with belief of many of the respondents (39%) in supernatural causation of the disease. Rwizaet al2 also reported that 51% of their respondents acknowledged hospitals as the place of treatment for epilepsy. In our study 40% of the people believed that epilepsy was curable as compared to 27% in Rwizaet al2 study.
Both in ours as well as in Rwizaet al2study only 17% respondents asserted thatepilepsy was hereditary. Still, majority (64%)of respondents said that epileptics should not marry. A case-control study by Graciaet al7 also concluded that most important risk factorfor epilepsy among Guaymi Indians was a positive family history (Relative Risk=14).Koulet al1 also elicited positive family history in 8.9% cases. WHO8 also reported that epileptics had difficulty in getting married. Marital disharmony and difficulty in getting married in epileptics was also reported by Sohietal.9 Callings10 reported that non-epileptics were married twice more often than epileptics. Masland11 however, reported that epilleptics of this generation had a significantly higher marriage and fertility rate.
National Institute of Mental Health and Nourosciences of India – NIMHANS12 had advocated that epileptics should avoid working near lire, water, moving machinery and driving in Initial stages of the disease. In our study as well as Rwiza et al’ study, majority of the respondents said that going near water or fire was risky for epileptics. Sohi et al’ reported that only 10% of their respondent took precautionary measures to avoid injury during fits (not allowing working near fire, water, not to climb trees, bicycle).
NIMHANS12 manual has advised against putting water in mouth or restraining the seizures physically, or putting anything hard between the teeth during the seizures. Many respondents in our study, however, told that if they witnessed a case of fit they would put water in patients’ mouth (17%), pinch the nostril (20%), put something between the teeth (56%) or force the patient to smell leather shoes.
WHO8 has also reported many barbaric practices to control seizures in epileptics in Africa e.g. reflecting burns, rubbing pepper in eyes. Sohi et al.9 also reported physical restraining of movement during seizures in 46% cases, forcing patient to smell leather shoes (28%), massage of soles/palm (23%), putting water in mouth (21%) and putting spoon/key between teeth (7%). Raja Ram and Parthasarthy4 also reported the practice of putting a key in patients’ hand to get relief in 30% of their study subjects. Bains and Raizada6also reported the practices like putting liquid in mouth, physical restraining of movements/convulsions, putting hard objects between teeth.
Thus, many harmful practices for management of convulsion in epileptics were reported in our study as well as in other studies from India. This calls for an intensive information education and communication strategy for the general public on correct management of epileptics, particularly during fits.
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- Rwiza HT, Matuger WPB, Kilonzo GP et al. Knowledge, attitude, practices towards epilepsy among rural Tanzanian residents. Epilepsia 1993; 34: 1017-1023.
- Singh AJ and Kaur A. Epilepsy in rural Haryana-prevalence and treatment seeking behaviour. JIMA 1997; 95: 37-39.
- Rajaram P and Parthasarthy R. Epilepsy education and its evaluation. Swasthhind, 1987; 31:117-118.
- Tandon PN. Epilepsy in India, New Delhi; ICMR, 1989.
- Bains HS and Raizada N. Parental attitude towards epilepsy. Indian Paediatrics 1992; 29: 1487-1490.
- Gracia F., Lao S.L. et al. Epidemiology of epilepsy in Guaymi Indians from Bocas del Toro Province, Republic of Panama. Epilepsia 1990; 31: 718-723.
- WHO Epilepsy in developing countries. WHO Chronicle, 1979; 33: 183-186.
- Sohi D., Walia IJ and Singh AJ. Seizure management practices adopted by the families of epileptics. Indian Medical Gazette 1995;129: 29-32.
- Collings JA Psychosocial well-being and epilepsy-an empirical study. Epilepsia 1990; 31: 408-426.
- Masland RL. Psychosocial aspects ofepilepsy. In : JP Porta and PL Morselli, Eds. Atext book of epilepsy London, Butterworth andCo. 1985; 356-377.
- NIMHANS Manual of Mental Health for Medical Officers. National Institute of Mental Health and Neurosciences, Bangalore, 1985.