https://doi.org/10.33698/NRF0194 Ritu Saroha, Neena Vir Singh, Sukhpal Kaur, Parampreet S.Kharbanda
Abstract : Epilepsy is one of the common neurological condition characterized by recurrent episodes of epileptic fits. Patients suffering with epilepsy face many problems like behavioral changes, cognitive disturbances, mood changes and GI disturbances before, during and after the epileptic fits. A phenomenological study was undertaken with the objectives to assess the lived experiences of patients before and during the epileptic fits so that guidelines can be prepared for the patients and their care givers to prevent the complications associated with epileptic fits.Ethical approval was taken from the Institute Ethics Committee PGIMER, Chandigarh. Consent was obtained from the study subjects. The study was conducted in Neurology OPD, PGIMER, Chandigarh. Using purposive sampling technique, thirty diagnosed patients suffering with epilepsy were included in the study. The tools used for the study were socio demographic data of the subjects, clinical profile of the subjects,In depth interview guide and audio tape recorder. Data was collected from the patients by taking in-depth interviews related to their experiences before and during the epileptic fits. Recordings of the interviews were done by using audio tape recorder. Verbatims were prepared. Seven themes and twenty one subthemes were identified and described. Themes were : Physical problems (fits with warning signs), epileptic fits without warning signs, communication problems, triggering factors of epileptic fits, patient’s efforts to prevent injuries before epileptic fits, malpractices of bystanders and injuries associated with the epileptic fits. As consciousness is preserved in patients with partial seizures, so only those patients explained about the malpractices of bystanders, injuries before and during the epileptic fits and their efforts for prevention of injuries. Patients with generalized seizure were not able to explain about these practices because of loss of consciousness during the epileptic fits.
Based on these experiences, guidelines can be prepared for patients and their care givers regarding the prevention of complications associated with epileptic fits. These guidelines may provide knowledge to the patients and care givers regarding Do’s and Dont’s before, during and after the epileptic fits.
Keywords
Epilepsy, Experiences, Complications, Guidelines.
Correspondence at
Ritu Saroha
Sister Grade-2 PGIMER, Chandigarh
Introduction
Epilepsy is a chronic neurological disorder affecting both male and female at any age group, with worldwide distribution. It is characterized by common symptoms called “Epileptic fits”, which may occur in the context of a brain injury that can be systemic, toxic or metabolic. An epileptic fit is a brief episode of signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain. The effect can vary from uncontrolled jerking movements (tonic-clonic seizure) to momentary loss of awareness (absence seizure).The annual incidence of epilepsy is 23-190 per 100000 per year. The incidence of epilepsy is eventually higher in children and even more variable, ranging from 25 to 840 per 100000 per year.
1 Epileptic fits may also cause “sensation” that only the patient feels. Patients face many problems before and during the epileptic fits like perception of a strange light, unpleasant thoughts, visual changes, unpleasant smell and auditory changes etc. These subjective feelings are commonly known as ‘Aura’. A minority of people have seizure’s triggers such as strong emotions, intense exercise, music or flashing lights. Previous research studies showed that the precipitating factors of epileptic fits as heat, weakness, low blood pressure, tension, fever and fear.2 During fits patients presents with various types of symptoms like behavioral changes, cognitive disturbances, anxiety, mood changes, sleep disturbances, GI symptoms and headache.3 Sign and symptoms of epilepsy depends on the type of seizures. Patients presented with tonic clonic type of seizures have frothing from the mouth, shaking of the limbs and jerky movements of the body.
2 Patients with epilepsy and their care givers also have inadequate knowledge regarding the treatment regimen and first aid management of the epileptic fits. Various practices documented include placing a key in the hand of the patient, administered liquid orally, applying pressure to restrain the body, putting some objects into the mouth to force the teeth open. So, patients are more liable to get injuries during the epileptic fits like loss of teeth, injuries to the head, fracture and dislocation.4-6 It is clear from above discussion that patients face many problems associated with fits. Patients are more vulnerable to get injuries because of inadequate knowledge of their care givers. So the experiences of epileptic patients during fits should be explored to provide them education regarding management of disease condition and to reduce complications associated with fits. Hence the present study was undertaken.
Objectives
To explore the lived experiences of patients before and during epileptic fits.
Materials and methods
Qualitative research approach was employed in the study. Phenomenological research design was selected to describe the lived experiences of patients during the occurrence of fits. Study was conducted in Neurology OPD, PGIMER, Chandigarh. Permission from head, department of Neurology was taken before conducting research study. Ethical approval was obtained from the Institute Ethics Committee, PGIMER, Chandigarh. Informed written consent was sought from each participant. Using purposive sampling technique thirty diagnosed patients with epilepsy were included in the study. The tools used for data collection were socio demographic data of the subjects, clinical profile of the subjects, in depth interview guide and audio tape recorder. Tools were prepared after extensive literature review and validated by experts in the field of nursing and neurology. Semi structured interview guide was used which consisted of 30 questions related to epileptic fits. Pilot study was done on four subjects and it was feasible to conduct the research study.
Data was collected during the month of July-August 2014. Patients were made to sit comfortable in one of the room. Written consent was taken from the patients. Researcher had developed rapport with the patients. Indepth interviews of thirty diagnosed patients with epilepsy were taken by using audio tape recorder. On an average, the time spent for each interview was 45 minutes. Interviews were recorded by using the audio tape recorder and transcribed into verbatims.
The data was analyzed into two parts. In the first part, descriptive statistics was used to describe the socio demographic data of the patients and clinical profile of the patients. In the second part, recorded interviews were transcribed into verbatims and analyzed by using colaizzi’s steps of data analysis. It includes reading and re- reading of participant’s description, developing significant statements, formulating meaning of statements, grouping into cluster of themes, interpreting themes into exhaustive description of phenomenon, validating with clients and final description of the essence of the phenomenon.
Results
Socio demographic of profile subjects
Half of the subjects were in age group of 26-40 years. Mean age of subjects were
28.9 ± 10.02 years, with the range of 11-50
years. Half of the subjects were male. About 70% belonged to nuclear families & 10% had family history of epilepsy. More than half of the subjects were married. Approximately on third of subject were below matric. More than 50% subjects were unemployed and 50% were having per capital income of Rs. 3000/- to 6000/- per month.
Clinical profile of the subjects
Table 1 depicts the clinical profile of the subjects. 26.7 % subjects had temporal lobe epilepsy. Half of the subjects had co-morbidities of which 20% had hypertension and migraine, 13.3% had diabetes and hyperthyroidism. 56.6% subjects had history of medical illness.13.3% and 10% subjects had history of surgical and psychological illness in childhood. Approximately one fourth had history of drug intake out of which 37.5% subjects took analgesic and antihypertensive drugs, 12.5% subjects used to take anti diabetic medications and sleeping pills.
Table 1: Clinical profile of the subjects
|
n%
Thematic analysis
Colaizzi’s method was used to analyze the data. Firstly in depth interviews of thirty patients were taken by using audio tape recorder. Verbatims were prepared and out of them, total 237patient’s responses were framed. From the patient’s responses, seven main themes and twenty one sub themes were formulated.
Eight themes included : Physical problems (fits with warning signs); Epileptic fits without warning signs; Communication problems; Triggering factors of epileptic fits; Injuries during epileptic fits; Patient’s efforts to prevent injuries before the fit and mal practices by the bystanders during the epileptic fits. Only the patients with partial seizure were able to explain about the themes like mal practices of bystander, injuries associated with epileptic fits and patient’s efforts to prevent them.
Themes with frequencies of patient’s responses
Table 2 depicts the themes with frequencies of patient’s responses. Out of total 237 patient’s responses, 154 responses represented the physical problems, 29 represented the triggering factors of epileptic fits and 4 responses of patients with partial seizures described the malpractices of bystanders. Out of 154 responses related to physical problems, 23.4% were regarding the abnormal sensation before the epileptic fit. Under the theme of triggering factors of epileptic fits, out of 29 patient’s responses, 65.6% of the responses were about stress and tension. Out of the total 23 patient’s responses regarding the injuries during epileptic fits, 73.9% were about minor injuries or trauma.
Description of the themes
1. Physical problems
(Fits with warning signs)
The main theme of the study was the physical problems amongst all the patients. Majority of the participants had the experiences of abnormal sensation of limbs before the epileptic fits. They presented with warning signs of epileptic fits. One of the patient said ‘During fits, I experience clenched teeth, abnormal movement of eyes, hands and legs. Other patient said ‘Before the epileptic fit, I experience tingling sensation in my left thumb, it radiates to the lips and eyes. I experience numbness of the lips, eyes and excessive sweating. My whole body becomes very cool.’One patient said ‘Before the fits, I usually feel that there is decrease in my blood pressure. I had the feeling of nervousness. I always ask for a glass of water. My body becomes very stiff. I feel abnormal movements of the arms and legs.’Another patient said ‘Before the fits, whatever activities I am doing at that time, becomes very fast. For example my speed of typing or working increases. Sometime I feel that the things are moving around me in a circular pattern’.One patient said ‘Before the fit, my ears get blocked, I can’t hear anything. My eyes become red, I can’t see properly. I always hear various types of sounds as if someone is talking around me’.
2. Epileptic fits without warning signs
Six responses of patients gave the clue about this theme. Some patients did not experience any kind of warning sign before the fits, they get fits without any warning signs. These patients are more prone to get injuries associated with the fits. One patient said ‘Before the fit, I experienced nothing. Suddenly I got epileptic fit without much warning sign. I can’t do anything. I get fits even during sleep. Time is not specific for my fits’.
Table 2: Themes with frequencies of patient’s responses
N=237
| Themes | n(%) |
| Physical problems (n=154)
Before epileptic fits (fits with warning signs) Abnormal sensations(Tingling sensation, abnormal movements of face, eyes or arms) Physical sensations like dizziness, headache, numbness and light headedness Perceived sounds, tastes or smells Distorted emotions, such as panic or fear |
36(23.4) 18(11.6) 3(2.0) 3(2.0) |
| During epileptic fits
Abnormal bodily movements Alteration in level of consciousness |
29(18.8) 27(17.5) |
| After epileptic fits Fatigue and weakness Memory changes Headache
Confusion |
20(13.0) 8(5.2) 6(3.9) 4(2.6) |
| Epileptic fits without warning signs (n=6) | 6(100.0) |
| Communication problems (n=16)
Unable to speak before and during the epileptic fit |
16(100.0) |
| Triggering factors of epileptic fits (n=29)
Stress or tension Impact of time Lack of sleep Improper intake of food |
19(65.6) 4(13.8) 3(10.3) 3(10.3) |
| Injuries during epileptic fit (n=23)
Minor injuries or trauma Tongue bite |
17(73.9) 6(26.1) |
| Patient’s efforts to prevent injuries before the fits (Patient’s responses with partial seizures) (n=5)
Patients tries to sit or lie down before the epileptic fit. |
5(100.0) |
| Malpractices of bystanders (Patient’s responses with partial seizures) (n=4)
Puts something in patient’s mouth Hold the patient during the epileptic fits Puts the patient in lying down or sitting position |
2(50.0) 1(25.0) 1(25.0) |
3. Communication Problems
Sixteen patient’s responses gave the clue about this theme. Some patients could not be able to communicate before and during the fits. One patient said ‘Before the fit, my tongue become heavy because of which I can’t speak properly. I want to speak during that period but not able to do so. I experience headache, weakness and heaviness in the upper and lower limb’.
4. Triggering factors of epileptic fits
Patient reported stress, tension, improper intake of food and lack of sleep as the triggering factors of epileptic fits. One of the patient’s mother said ‘My daughter had the fits whenever there is lack of sleep. She takes lot of tension related to the studies.’ ‘Other patient said I have lots of stress and frustration in my life. Sometime because of the headache, hot environment and whenever I am in overcrowded places, I have the fit’.
5. Injuries during epileptic fit
Patients reported about various types of injuries associated with epileptic fits. They reported about tongue bite, minor injuries or trauma during fits. Twenty three patient’s responses gave clue about this theme. One patient said ‘Due to complete loss of consciousness during fit, one day I fell down on the ground and got injured’.Other patient said ‘Sometimes I had tongue bite and injuries on my hands during the epileptic fit. Once because of tongue bite, I had eight stitches on my lips and tongue.’Another patient said ‘because of fits, I had repeated injuries on my head, face and hands’.
6. Patient’s efforts to prevent injuries before the fits
Patients had various types of injuries during fits. Only the patients with partial
seizures were able to prevent themselves from the injuries associated with epileptic fits. Some patients with generalized seizures (during the aura phase only) were explained about these practices. One patient said ‘Initially I try to avoid the symptoms by standing, walking and I pretend that nothing happened to me. When my condition become more severe, only then I call others for help.’Other patient said ‘I always try to sit or lie down at the time of fits because sometime I got injured during the epileptic fit.’
7. Malpractices of bystanders
Patients and their care givers have the inadequate knowledge regarding the treatment of fits. Because of lack of awareness and knowledge, patient’s bystanders have done some malpractices during the epileptic fits. They tried to put something into the patient’s mouth and hold the patient during fits. One patient said ‘During the epileptic fits, my family members tried to put in lying down position because many a times I got injured during fits.’ Another patient said that ‘During the epileptic fits, my family members tried to hold my hands and legs to prevent me from injury.’
Discussion
Epilepsy is a chronic neurological disorder characterized by epileptic fits. It affects people of all age group. Epileptic fits are the episodes that can vary from brief to long periods of vigorous shaking. The patients suffering with epilepsy have various kinds of problems associated with the fit. Due to inadequate knowledge and malpractices of their bystanders, patients are more liable to get injuries during fits. This study was conducted among patients suffering with epilepsy. The objectives of the study were to explore the lived experiences of patients before and during the epileptic fits. So that guidelines can be prepared for the patients and their care givers regarding prevention of complications associated with the epileptic fits.
This study described that patients had the experiences of abnormal body movements, perceived abnormal sounds, taste or smell and alteration in the level of consciousness before and during the epileptic fits. A study conducted by scaramelli on prodromal symptoms in the epileptic patients showed that patients suffering with epilepsy were presented with different types of symptoms before the actual occurrence of the fits. These were behavioral changes, cognitive disturbances, anxiety, mood changes, sleep disturbances, voiding changes, GI symptoms and headache.3 Another similar study conducted by Singh A showed that frothing from the mouth and shaking of limbs were the main physical problems reported by the patients during fits.2
Most of the patients were aware of epileptic fit before its occurrence through warning signs but some of patients were not. So these patients are more prone to get injuries during fits. Results of the present study showed that tongue bite, minor trauma and injuries faced by the patients during the epileptic fits. A study conducted by Tellaz J showed that loss of teeth, injuries to the head, fracture and dislocation were the main complications associated with the epileptic fits.6 Result of the present study showed that lack of sleep, stress, tension and improper intake of food were the main triggering factors of the epileptic fits. A study conducted by Singh A showed that heat, weakness, low blood pressure, tension, fever, fear, physical weakness and headache were the precipitating factors of the epileptic fits.2
Present study reported that patient’s relatives had inadequate knowledge regarding the first aid management of epileptic fits. They did some malpractices during the epileptic fits like putting something into patient’s mouth, holding the patients during the epileptic fit, putting the patient in lying down or sitting position. Bains and Raizada had also revealed that during fits, almost 50% of the parents administered wrong and harmful treatment in the form of liquids by mouth to patients. Patients (with partial seizures) also reported that their parents apply pressure over the body to restrain the body.5 Another similar study conducted by Rajaram and Parthasarathy showed that people believed just by placing a key in the hand of the patients during fit was sufficient to cure the them from the fits.4 Goel S conducted a study regarding the first aid management of fits among the urban, slum and rural population. Result showed that people living in urban area were more aware about the management of fits than the slum and rural population. They called for medical help if repeated fits occur, removed objects, loosen the tight clothing and turned the patient to the side.7
Hence it is concluded that the patients with epilepsy face many problems associated with the fits like physical problems, communication problems, injuries during epileptic fits and malpractices of bystanders. Patients and their care givers have inadequate knowledge regarding the first aid management of epileptic fits. So patients are more vulnerable to get injuries during fits. Based on the findings of study, guidelines can be prepared for the patients and their care givers for the prevention of complications associated with epileptic fits.
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