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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.
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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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