RAJIV GANDHI UNIVERSITY OF

HEALTH SCIENCES

PRELIMINARY SYNOPSIS ON

THE M.SC.(N) DISSERTATION

A STUDY TO ASSES THE LIFESTYLE ADAPTATIONS AND

THE KNOWLEDGE OF EPILEPSY AMONG EPILEPTIC

PATIENTS IN SELECTED HOSPITALS IN MANGALORE, WITH

A VIEW TO PREPARE A SIM.

Submitted By:

Ms. Haseena Beegam.k

1st year M.Sc. Nursing student,

Srinivas Institute of Nursing

Sciences, Farangipete Post,

Arkula, Valachil Padavu,

Mangalore – 574143.

Rajiv Gandhi University of Health Sciences, Karnataka, Bangalore.

ANNEXURE – II

PROFORMA FOR REGISTRATION OF SUBJECTS FOR

DISSERTATION

1. NAME OF THE CANDIDATE

AND ADDRESS

(IN BLOCK LETTERS)

MS. HASEENA BEEGAM K.

1st YEAR M. Sc. (NURSING)

MEDICAL. SURGICAL NURSING

SRINIVAS INSTITUTE OF NURSING

SCIENCES, VALACHIL,

MANGALORE – 574 143

2. NAME OF THE INSTITUTION

SRINIVAS INSTITUTE OF NURSING

SCIENCES,

VALACHIL PADAVU, ARKULA,

FARANGIPETE POST,

MANGALORE – 574 143.

3. COURSE OF STUDY

SUBJECT

M.Sc. NURSING

MEDICAL SURGICAL NURSING

4. DATE OF ADMISSION 15-06-20095. TITLE OF THE TOPIC.

A STUDY TO ASSES THE LIFESTYLE ADAPTATIONS

AND THE KNOWLEDGE OF EPILEPSY AMONG

EPILEPTIC PATIENTS IN SELECTED HOSPITALS IN

MANGALORE, WITH A VIEW TO PREPARE A SIM.

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6. BRIEF RESUME OF INTENDED WORK

Introduction

You can feel my anxiety

when you walk through the door.

Air thick as butter,

You find me on the floor.

Electrical shock

from my head to my toes.

Pulsing, Convulsing,

My heart beat slows

-Katy Rose

Epilepsy has affected human beings since the dawn of our species and has

been recognized since the earliest medical writings; in fact; few medical

conditions have attracted so much attention and generated so much controversy as

epilepsy. The ancient Babylonians wrote- about the symptoms and causes of

epilepsy about 3000 years ago. They thought that epileptic seizures were caused

by evil spirits or demons that had invaded a person’s body. Different spirits were

thought to cause the different kinds of seizures. Priests attempted to cure people

with epilepsy by driving the demons out of them with magic and prayers.

This superstition about epilepsy was challenged by ancient physicians like

Atreya of India and later by Hippocrates of Greek, both of whom recognized

seizures as a dysfunction of the brain and not a supernatural event. In 400BC

Hippocrates wrote the first book on epilepsy, “On the Sacred Disease”, refuting

the idea that epilepsy is a curse or a prophetic power. He proved that epilepsy is a

brain disorder, in which he specified it to be sacred.

“Epilepsy is like terrorism of the brain you don’t know when it’s going

to strike, where you are going to be” – David Axelrod.

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Epilepsy is derived from the Greek word Epilambaneim, meaning to

seize or take (weaver, 2001). Literally, epilepsy means “to be overcome” or “to

be underseige”. It is a disorder of the central nervous system, with recurrent,

unprovoked seizures. The causes include traumatic brain injury, brain tumor and

infection. The increased risks includes vascular disease, tumor, accumulated

trauma, infection and chronic alcoholism.Epilepsy is called as the“falling

sickness”, it is called so because, the patient falls suddenly to the ground; a

disease characterized by paroxysms (fits) occurring at interval and attended by

sudden loss of consciousness and convulsive motions of the muscle.

Epilepsy is one of the most prevalent neurological conditions and it has no

age, racial, social class, geographic, or national boundaries. The impact of

epilepsy rests not only on the individual patient, but also on the family and

indirectly on the community. The burden of epilepsy may be due to the physical

hazards of epilepsy resulting from the unpredictability of seizures; the social

exclusion as a result of negative attitudes of others toward people with epilepsy;

and the stigma, as children with epilepsy may be banned from school, adults may

be barred from marriage, and employment is often denied, even when seizures

would not render the work unsuitable or unsafe. Furthermore, epilepsy is a

disorder associated with significant psychological consequences, with increased

levels of anxiety, depression, and poor self-esteem compared with people without

this condition.

Epilepsy has been classified according to the age of onset, cause, area of

origin, Electro Encephelo Graphic (EEG) abnormalities, and clinical types of

seizure. Usually the clinical manifestations processed with aura, a pre convulsive

phase, in which the subjective sensation may be strange smell, noise or a scene of

risings. Next phase begins with convulsive twitching in an upper extremity.

Involuntary movements may spread centrally and involve the entire limb; this

phase is so called as convulsive stage, and lasts for 2 to 5 minutes. The next phase

is said to be post-convulsion phase in which, the client relaxes and remains totally

unresponsive for a time, then go in to a deep sleep lasting 30 minutes to several

hours. This may be followed by general fatigue, depression, confusion or

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headache.

Epilepsy patients may have obstacles to independence, either perceive or

real, can contribute to feelings of low morale it has long been accepted that

epilepsy is not a fatal condition and this opinion remains widely held by heath

professionals today. However, it has been established that people with epilepsy

carry an increased risk of death when compared to the general population.

Researchers have tried to quantify the risk of death by examining rates and causes

of death in populations of people with epilepsy.

In Modern times, people with epilepsy were not allowed to marry or have

children.  Epilepsy was legally considered to be grounds for divorce by the Hindu

Marriage Act of 1955 and the Special Marriage Act of 1954, if either the man or

the women had recurrent seizures prior to marriage, the divorce was allowed by

Indian Insane Act of 1976 because it defined epilepsy as insanely, or as leading to

insanity. The Indian Epilepsy Association (IEA) put in great effort to dispel such

prejudices and fake beliefs nation wide and 17th of November has been declared

as National Epilepsy Day.

Nevertheless, the superstitious interpretation of epilepsy persisted for

centuries. Attitudes of past societies toward epilepsy have left a legacy of stigma

and damaging misconceptions which still persist today, as people with epilepsy

continue to face fear, prejudice and discrimination in their everyday lives.

6.1 Need For The StudyEpilepsy, a common chronic neurological disorder, with many possible

causes is characterized by a series of seizures, which can catch the sufferer

unaware at any moment. Epilepsy, also known as”falling sickness”, the normal

pattern of neuronal activity (of the nerve cells in the brain) becomes disturbed.

This causes strange sensation, emotions, and behavior or sometimes convulsion,

muscle spasm and loss of consciousness. It carries a considerable social stigma,

which affects 20% of population at some time in their lives.

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Globally, 40 to 50 million people have epilepsy. Nearly three-quarters of

the affected. Mostly those with epilepsy in non-industrialized nations receive no

treatment what so ever for their seizures. Throughout the world,

misunderstanding, fear and ill informed public attitudes toward this common

medical condition contribute to wide spread discrimination, isolation and social

rejection of people with epilepsy.

Mecarelli O, Voti PL et al (2007) conducted a descriptive study to assess

knowledge and attitudes toward epilepsy in schoolchildren and university

students in Rome, Italy. They administered a custom-designed questionnaire on

general knowledge, specific knowledge and social impact of epilepsy to a random

sample of upper-middle class pupils and university undergraduate students in

Rome. The young people they studied have a reasonable knowledge of epilepsy:

as many as 91% claimed to know something about the disease. Yet only 16%

correctly stated the prevalence as being about 1 in 100. Middle-school pupils and

university graduates consider epilepsy as an illness from which patients rarely

recover and one that creates problems in finding employment. The largest number

of correct answers for nearly all the questionnaire items came from university

students. These findings suggest that apart from an encouragingly large number

of the subjects they studied claim to know something about epilepsy (91% today

versus 73% 22 years ago), Italian students still know little about epilepsy.

According to World Health Organization (2004) Epilepsy is a chronic

condition characterized by uncertainty it affects more than 50 million people

worldwide and is an important public health problem

Tan (2004) has cited in his article on advances in epilepsy that the

prevalence rate in countries of Asia was increasing. In other countries like china

it was (4.4), Japan (1.7), Parsis in India (4.7), Kashmir in India (2.47), Pakisthan

(9.85), Shrilanka (9.0) and Guam (4.9). These prevalence rates indicated that

prevalence of epilepsy in Asian countries was comparatively higher than world

wide.

Sridharan. R (2002) reported that epilepsy is the second most common

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chronic neurological condition seen by neurologists. It is estimated that there are

55,00,000 persons with epilepsy in India, 20,00,000 in USA and3,00,000 in

UK. Three to five per cent of the populations have a seizure sometime in their life

and half to one percent of the population have ‘active epilepsy’. The incidence of

epilepsy ranges from 40 to 70 per100, 000 in most developed countries and from

100 to190 per 100,000 in developing countries.

Sivanandan T V (2002) states the cumulative incidence of epilepsy —

the risk of individual developing epilepsy in his or her lifetime — is around 5 per

cent. The highest incidence is observed in neonates and young children, with a

second peak in old age. In recent times, the rate of incidence among the elderly

has been rising because of cerebro vascular disease

Paolicchi (2002) emphasized that disclosure of having epilepsy is a

difficult, personal decision for the client. For the clients to have support from

family, Health professional, siblings, spouse, however they need to have

knowledge about the disease. He reinforced that “people who have frequent

contact and direct supervisory responsibility should be aware of the patient’s

condition and understand clearly what should be done if a seizure occurs”.

Radhakrishnan k et al (2000) conducted a study covering the entire

population of 238, 102 people residing in 43, 681households in a semi urban area

of central Kerala, to ascertain the prevalence and pattern of epilepsy and to

characterize and quantify knowledge ,attitude, and practice (KAP)toward

epilepsy among the people of the state of Kerala. The results was 1,175 cases

(616 males and 559 females)with active epilepsy, providing a crude point

prevalence ratio of 4.9 cases per 1,000 people and an age adjusted prevalence

ratio of 4.7 cases per 1,000 population. The highest age specific prevalence ratio

of 6.5 per 1,000 occurred in the 10-19 year old age group. Sex specified

prevalence rates did not significantly differ. The proportion of generalized and

localization related epilepsies was 58.8% and 30.6%respectively.

Weaver (2001) reported that epilepsy is unique in that for many people, it

is a chronic yet intermittent disorder; they may go months or even years without

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a seizure. Epilepsy can also begin in childhood and persist, with little relief, for a

life time. Either way, people with epilepsy do not know when their next seizure

will occur.

Brodie and Schachter (2001) reported that for a woman with epilepsy

there is about a 3% chance of her baby developing epilepsy, with a greater risk

for those whose mothers have seizures during pregnancy. The antiepileptic drug

pregnancy register) was established to determine the risk of major malformations

and should be known by patients.

Dunn et al (1999) hypothesized that the combination of the unpredictable

nature of epilepsy, uncontrollable adverse events, negative self perceptions, and

attributions added to the perception of a lack of control, resulting in depression.

This suggests that need for measures to promote self-control in clients with

epilepsy and could include measures to help them comply with medication

regimens and to get adequate sleep, both of which could improve their illness.

It is quite obvious that epilepsy patients need emotional and psychological

support, especially immediately after diagnosis. They often don’t understand that

epilepsy is treatable, controllable and preventable. With the right treatment, some

people soon stop getting seizures. Between seizures, a person with epilepsy is no

different from anyone else he or she is absolutely normal in every sense of the

word,”

Within comprehensive therapeutic management of epilepsy, educational

programs for patients, and for caretakers of patients with epilepsy, are considered

to be extremely important, to increase knowledge about the disorder, and to

strengthen the patients’ responsibility for themselves, with the consequence of

living with as few limitations as possible.

There is no recent study on epilepsy in Mangalore region and also on this

population. The investigator believed that the study of patient’s knowledge

regarding epilepsy and its lifestyle adaptations, modification would explore their

lifestyle that can help to identify them to control the problems and complaints

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associated with it. Hence this study is relevant to this area, to this population, and

to this period.

6.2 Review of Literature

The Bible is an appropriate place to begin a review of literature and

epilepsy. Not only is it the all-time best seller, but also it is one of the oldest

works. In Mark 9:14-29 (also in Matthew 17:15-16 and Luke 9:37-43), a man

brings his small son with epilepsy to the disciples, but they fail to cure the boy.

The picture of an epileptic in those days was that of a person who was seized as if

by an evil spirit. This is how the father describes the child's episodes: Whenever

it seizes him, it throws him to the ground. He foams at the mouth, gnashes his

teeth and becomes rigid. I asked your disciples to drive out the spirit, but they

could not. (Mark 9:18).

Ratty LK et al (2009) conducted a descriptive non experimental study on

“Epilepsy patient’s conceptions of epilepsy as a phenomenon”. The objectives of

the study were to assess the epilepsy patients' conceptions of epilepsy as a

phenomenon and emotions related to those conceptions. Nineteen outpatients

were interviewed, and data were analyzed according to the phenomenological

methodology. Patients described epilepsy in six qualitatively different ways:

Epilepsy is (a) an illness related to physical disturbances, (b) a condition related

to physical disturbances, (c) a mental disturbance related to lack of mental

capacity, (d) a handicap related to psychological and/or social aspects, (e) an

identity related to being an epileptic, and (f) a punishment. The emotions

confidence, happiness, hope, and annoyance were related to epilepsy as an illness

or a condition, whereas shame, fear, sorrow, and guilt were related to the other

four categories. This study indicated that, to patients, the phenomenon of epilepsy

is above all a psychosocial nature and in that dimension closely related to

negative emotions.

May TW (2009) conducted a cross sectional study to assess the

knowledge of women with epilepsy about their condition and their need for

information and counseling. A total of 365 women with epilepsy aged from 16 to

75 years of age took part in this prospective, cross sectional study. All were

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treated by neurologists in private practice or out patient clinics. The physicians

distributed questionnaires to the women. The results were, most women (80 to

90%) lived together with partners, and about half of the women (44.9%) had

children. The majority of those with children were greatly worried during

pregnancy about risks to their newborn child. They were afraid of potential

handicaps (57.9%) and potential epileptic seizures of the child (52.5%) because

of their own epilepsy or anti epileptic drugs.

Elsevier T (2009) conducted a cross sectional study on epilepsy. The

objective of this study was to characterize the self-management behaviors of

patients. Additionally, they assessed the behavior differences depending on the

level of seizure control. Adult patients with epilepsy were recruited for this cross-

sectional study. They used two previously validated scales to assess various self-

management behaviors and collected clinical data. Sample consisted of 50

patients (23 women). The mean overall Epilepsy Self-Management Scale (ESMS)

question score was 3.72 ± 0.41. The mean question scores on the ESMS subscales

Medication Management, Information Management, Safety Management, Seizure

Management, and Lifestyle Management were 4.4, 2.7, 3.9, 4.0, and 2.6,

respectively. Information Management and Safety Management subscale scores

were higher in the patients continuing to have seizures. Based on the Morisky

scale, patients fell into either the low (n = 2), medium (n = 27), or high (n = 21)

medication-taking behavior category.

Safaryeh, Yazd et al (2008) conducted a cross sectional study on

awareness, understanding and attitudes towards epilepsy among Iranian ethnic

groups. The objective was to identify and specify the differences among 5 major

Iranian ethnic groups, ie, Persian, Azeri, Kurd, Lur and Arab regarding their

awareness, understanding and attitudes towards epilepsy and their beliefs about

the treatment of epilepsy. This study was carried out cross sectionally on a

sample containing 500 participants from 5 major ethnic groups In Iran. These

groups were selected using cluster random sampling method. A standandardised

questionnaire was used for data collection which was composed of four parts;

socio demographic grounds, awareness of epilepsy, attitude towards epilepsy and

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causes of epilepsy .The results shows that the level of awareness, understanding

and also beliefs about epilepsy among Iranian ethnic groups was fairly desirable.

Although they had a positive attitude about their employment, and their

association with healthy people.

Shibre T et al (2008) conducted a cross-sectional community based study

in predominantly rural area of central Ethiopia where there has been a continuous

supply of anti convulsant medications for the last 15 years. Their objective was to

assess the impact of this treatment upon the attitudes of rural people towards

epilepsy by comparing their finding to a community attitude survey conducted

between 1986 & 1988. The results include the belief that epilepsy is a contagious

illness is significantly less prevalent compared to earlier days, 30.7% versus

44.6%. considering epilepsy to be a form of the mental illness as increased in the

current sample 40.9% versus 1.9%.Attribution of the etiology to super natural

factors is significantly diminished and the belief that epilepsy is hereditary has

significantly increased. The results show on going negative attitude towards

epilepsy within the community.

Saburi G.L et al (2006) conducted a study to examine the perceived

family reactions and the quality of life in adults with epilepsy in Harare,

Zimbabwe. Perceived family reactions refer to behaviors that occur in response to

epilepsy. Roy's Adaptation Model was used to conceptualize quality of life in the

physiologic, self-concept, interdependence, and role-function modes. Face-to-

face interviews were conducted on a convenience sample of 66 adult’s ages 18-45

years. A three-part structured interview schedule was used to describe

demographic data, quality of life (using a modification of the disease-specific

Quality of Life in Epilepsy 89 [QOLIE-89] instrument), and perceived family

reactions. Quality of life was not adversely affected in the physiologic, self-

concept, and interdependence modes but was affected in the role-function mode.

Family reactions were positively correlated with the quality of life.

Buelow JM (2006) used a prospective randomized double-blinded trial to

evaluate the effectiveness of antiepileptic drug among a total number of 42 adult

epilepsy patients who were selected and divided in to experimental and control

group. The experimental group was treated with antiepileptic drugs, but the

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control groups were treated with palliative treatment. The experimental group

shows a significant increase (75%) in controlling and managing the life without

epileptic drugs.

Rahman AF (2005) conducted a descriptive study to asses the awareness

and knowledge of epilepsy among students in a Malaysian university. The aim of

this study was to asses the current level of awareness and knowledge of epilepsy

among students at a public university in Malaysia. The questionnaire was given

to the students to answer a series of questions on awareness and knowledge of

epilepsy. 289 students were participated, and the results were, 86.5 % of students

had heard or read about epilepsy, while 55.6% had observed seizure. 30.7% said

they knew the cause of epilepsy and 5.3% through epilepsy was caused by evil

spirits. Epilepsy was considered hereditary by 66.9% of respondents, while 4.9%

thought it was contagious. The findings indicate a generally favorable level of

awareness and knowledge of epilepsy among students at university

Rosche j et al (2003) conducted a descriptive study on knowledge illness

in patients with refractory epilepsy, in Change Gung memorial hospital, Taiwan.

A sample of 44 patients with refractory epilepsy was randomly selected for the

study, and was interviewed. Results shows that there were significant correlation

between the age at onset and duration of disease; they also concluded that normal

aging on cognitive deterioration effects refractory epilepsy.

Dantas FG.et al (2001) conducted a descriptive study on knowledge and

attitudes towards epilepsy among primary, secondary and tertiary level teachers,

the attitude towards people with epilepsy are influenced by the degree of

knowledge of the condition. Teachers usually do not receive any formal

instruction on epilepsy during this training. The objective of the study was to

asses 300 teachers’ knowledge and attitude towards epilepsy by answering a

questionnaire in order to quantify their knowledge, attitude and practice towards

epilepsy. Almost all the teachers had heard about epilepsy yet could not

demonstrate discrimination among the students. Some teachers still thought that

epilepsy was contagious.

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6.3 Statement of the ProblemA study to assess the lifestyle adaptations and the knowledge of epilepsy

among epileptic patients in selected Hospitals, in Mangalore, with a view to

prepare a SIM.

6.4 Objectives of the Study

1. To assess the knowledge of epilepsy patients regarding the disease.

2. To identify the lifestyle adaptations of epilepsy patients.

3. To find out the relationship between the knowledge and selected demographic

variables like family history of epilepsy, duration of illness and religion.

4. To prepare a SIM on epilepsy.

6.5 Operational Definitions

Epilepsy : - is a disease of the brain characterized by recurrent episodes of

convulsions.

Knowledge : - knowledge refers to the awareness of epileptic patients

regarding the epilepsy.

Life style adaptations : - It involves selected aspects of practice adapted by

an epileptic client that are adjusted to the daily life style.

Self instructional module :-refers to a self explanatory guide which covers

the information’s and instructions needed for the epileptic patients,

regarding epilepsy, to take care of themselves.

6.6 Assumptions

The study assumes that

The knowledge of epileptic client regarding epilepsy and their life style

adaptation is minimum.

The knowledge will vary according to selected demographic variable such

as family history of illness, duration of illness and religion.

Epilepsy patients can improve their health status by understanding the life

style adaptations.

12

7

6.7 Delimitations

This study is limited only to the epilepsy clients

Attending the selected hospitals in Mangalore.

Who are willing to participate in the study.

With the age group between 15 to 60 years.

6.8 Hypothesis

Research Hypothesis

H1:- There will be a significant relationship between knowledge and

family history of epilepsy

H2:- There will be a significant relationship between lifestyle adaptation

and family history of epilepsy.

H3:- There will be a significant relationship between knowledge and

duration of epilepsy.

H4:- There will be a significant relationship between lifestyle adaptation

and duration of epilepsy

Statistical Hypothesis

H01:-There will be no significant relationship between knowledge and

family history of epilepsy

H02:-There will be no significant relationship between lifestyle adaptation

and family history of epilepsy.

H03:-There will be no significant relationship between knowledge and

duration of epilepsy.

H04:-There will be no significant relationship between lifestyle adaptation

and duration of epilepsy

MATERIALS AND METHODS

7.1 Source of dataThe data will be collected from the epileptic patients who full fill the

inclusion criteria

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7.1.1 Research Design

The research design selected for this study is descriptive non experimental

design.

SCHEMATIC OUTLINE OF RESEARCH DESIGN

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DESIGNNon-Experimental descriptive research design

STUDY SETTINGSelected Hospitals in Mangalore

SAMPLINGPurposive Sampling

SAMPLE50 subjects with epilepsy who are attending the out patient departments of

selected hospitals in Mangalore

7.1.2 Setting

The study will be conducted in selected hospitals in Mangalore.

7.1.3 Population

All the epileptic patients attending the out patient departments of selected hospitals in Mangalore, Who meets the inclusion criteria, constitute the population.

7.2 Method of Data Collection

7.2.1Sampling Procedure

Purposive sampling will be used to collect the data.

INSTRUMENT

Structured questionnaire will be used

DEPENDENTKnowledge and life style Adaptation of

epilepsy

ATTRIBUTESocio demographic

variable such as religion, family history of illness and Duration of illness.

VARIABLES

INDEPENDENTSIM

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Summary, Findings, Conclusion

Frequency and percentage Mean score, standard Correlationof socio demographic deviation, percentage of coefficient analysis,Variables knowledge and Life chi–square test

style adaptations

ANALYSIS

8.

7.2.2 Sample Size

50 patients with epilepsy, attending outpatient department in selected

hospitals, Mangalore.

7.2.3 Inclusion Criteria for Sampling

Diagnosed cases of epilepsy

Both male and female patient will be selected

Patients who are willing to participate

Patients in the age of 15-60 years

Epilepsy patients who are attending the outpatient departments in selected

hospitals in Mangalore.

7.2.4 Exclusion Criteria for Sampling

Patients who are not willing to participate

Patients below 15 years and above 60 years

Diagnosed case of epilepsy with mental disorders.

7.2.5 Instrument Used

A structured questionnaire on epilepsy.

7.2.6 Data Collection Method

The investigator

1. Will get permission from concerned authority of selected hospitals.

2. Will introduce her self to the participants.

3. The objectives of the study will be explained to the participant.

4. Formal written consent will be taken from the participants.

5. A structured questionnaire will be given to those samples, who fulfill

the inclusion criteria.

6. Give assurance to the participants that, the collected data will be kept

confidential.

7. Allow Participants to clarify their doubts.

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7.2.7 Data Analysis Plan:

Plan of data analysis as follows.

Data will be organized in a master sheet

Frequencies and percentage analysis of sociodemographic variables will

be done.

Range, standard deviation and mean percentage scores for knowledge and

life style adaptation will be done.

Inferential statistics especially, chi-square test is used to assess the

relationship between the knowledge regarding epilepsy and lifestyle

adaptation of client with selected socio demographic variables.

7.3: Does the study require any investigation or intervention to be conducted

on patients or other humans or animals? If so please describe briefly?

No intervention is required on humans or animals except that few questions

are to be answered by the patient with epilepsy.

7.4: Has ethical clearance been obtained from your institution in case of 7.3?

Permission will be obtained from the concerned authorities.

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