J.S.S COLLEGE OF NURSING
1ST MAIN SARASWATHIPURAM, MYSORE
SYNOPSIS SUBMISSION
BY:
Miss. NEENU AUGUSTINE
1ST YEAR M.Sc NURSING
J.S.S COLLEGE OF NURSING
1STMAIN, SARASWATHIPURAM
MYSORE- 570009
GUIDE:
MRS. TITTU SUSAN
ASST. PROFESSOR
J.S.S COLLEGE OF NURSING
1STMAIN, SARASWATHIPURAM,
MYSORE- 570009
BATCH: 2010-2012
PROFORMA FOR REGISTRATION OF SUBJECT FOR
DISSERTATION
1. / NAME OF THE CANDIDATE AND ADDRESS(in block letters) / MS.NEENU AUGUSTINE
1ST YEAR M.Sc(N)
J.S.S.COLLEGE
OF NURSING, MYSORE.
2. / NAMEOF THE INSTITUTION / J.S.S.COLLEGEOF NURSING,
MYSORE.
3. / COURSEOF STUDY
AND SUBJECT / M.Sc NURSING,
(PAEDIATRIC NURSING)
4. / DATE OF ADMISSION OF
THE COURSE / 08.07.2010
5. / TITLE OF THE TOPIC / “ASTUDY TO EXPLORE THE FACTORS ASSOCIATED WITH EPILEPSY AND TODETERMINE THE EFFECTIVENESS OFEDUCATION PROGRAMME ONHOME MANAGEMENT OF EPILEPSY ON KNOWLEDGE AND PRACTICESOF MOTHERS OF EPILEPTIC CHILDREN IN PAEDIATRIC SETTINGSOF SELECTED HOSPITALSAT MYSORE.”
6. BRIEF RESUME OF THE INTENDED WORK
6.0 INTRODUCTION
“Childrenare like wet cement. Whatever falls on them makes an impression.”
Dr. Haim Glinott
Diseases of the nervous system are fairly common in paediatric practice. Neurological symptoms are also frequently encountered in a wide variety of systemic illnesses. Almost 20-30 percent of children encounter acute, chronic or recurrent neurological illnesses. These are major contributors to childhood morbidity and disability. Neurological disorders in children occurs when a child develops problems with parts of the nervous system specifically the brain, spinal cord or nerves.1
Epilepsy is one of the commonest neurological disorders affecting the children. It is derived from the ancient greek word epilepsia which means “to seize” is a common neurological condition characterized by recurrent unprovoked seizures. These seizures are transient signs and/or symptoms of abnormal, excessive or synchronous neuronal activity in the brain. 2
According to World Health Organisation (WHO), "Epilepsy is also one of the oldest conditions known to mankind. It is characterized by a tendency to recurrent seizures and is defined by two or more unprovoked seizures.Seizures may vary from the briefest lapses of attention or muscle jerks to severe and prolonged convulsions. They may also vary in frequency, from less than one a year to several per day". 2
According to WHO,epileptic seizure is the result of transient dysfunction of part or all of the brain due to excessive discharge of a hyper-excitable population of neurons, causing sudden and transitory phenomena of motor, sensory, automatic or psychic nature. 2
Epilepsy is a medical condition that produces seizure affecting a variety of mental and physical functions. When a person has two or more seizures they are considered to have epilepsy. A seizure happens when a brief strong urge of electrical activity affects part or all of the brain3. Epilepsy is a brain disorder where neurons or cluster of nerve cells in the brain give abnormal signals. 4
The causes of epilepsy in children and adolescents are more likely to have epilepsy of unknown or genetic origin. Trauma and brain infection can cause epilepsy at any age and may account for a higher incidence of epilepsy in developing countries. For example, a common cause in Latin America is neurocysticercosis cysts on the brain caused by tapeworm infestation, while in Africa, malaria and meningitis are common causes and in India neurocysticercosis and tuberculosis often lead to epilepsy. Even febrile illness of any kind can trigger seizures in young children. According to WHO estimates, about 3% of all children can have febrile convulsions but a small percentage of them can develop epilepsy later in life. Even abnormalities in the blood supply/circulation can cause epilepsy.2
The assessment and diagnosis depends on thorough history, skilled observation and use of several diagnostic tests. The goal of treatment of seizure disorder is to control the seizures or to reduce their frequency and severity, discover and correct the cause when possible.5 The preventive aspect includes drug therapy (antiepileptic drugs) and surgical therapy. Another treatment for refractory seizures is the use of ketogenic diet, which severely restricts carbohydrate and protein intake and uses fat as the primary fuel to produce ketosis, vagus nerve stimulation using an implantable device that reduces seizures in individual who have not had effective control with drug therapy.6
Epilepsy has no geographical, racial or social boundaries; anyone can get epilepsy at anytime. 20% of cases develop before the age of 5 and 50% develop before the age of 25. Epilepsy is a common child hood neurological disorder throughout the world irrespective of age, gender, colour, religion, race and nationality. Epilepsy from ancient time to present scenario is a global health problem.7
The parents of epileptic children are taught about the causes, signs and symptoms and management of epilepsy as the prolonged epilepsy may increase the mortality rate. The likelihood of survival from complications is more when home treatment has started before medical interventions at hospital. Since epilepsy cannot be prevented, it can be controlled through proper management from available resources and thereby decreases the rate of occurrence of epilepsy.8
6.1 NEED FOR THE STUDY
Epilepsy is one of the most frequent, chronic neurologic disorders of childhood. The WHO estimates that 3 to 10 per 1000 of the total world population have epilepsy. However, epilepsy is a hidden disorder and many cases go unreported. There may be as many as 40 million epileptics worldwide. Epilepsy is one of the three most lifelong developmental disabilities in childhood. It is prevalent among socioeconomically deprived populations of the world.2
A door todoor two stage survey was conducted in Calicut district, Kerala to determine the prevalence of epilepsy and its association with indices of malnutrition, infection and perinatal complications among the random sample of 1172 children aged 8-12 years.A history of perinatal complications,low body mass index and recent physical symptoms were independently associated with active epilepsy. The results suggest epilepsy is highly prevalent in this population of children and that further research is needed into its cause.9
Based ontotal projected population of India in the year 2001, the estimated number of people with epilepsy would be 5.5 million. Based on a single study on the incidence the number of new cases of epilepsy each year would be close to half a million. In India 74%population constitutes rural population and the number of people with epilepsy in rural areas will be approximately 4.1 million and three fourths of who will not be getting any specific treatment as per the present standards.10
A hospital based study over a period of 6 months aimed to evaluate the frequency and diagnostic pattern of epilepsy in population with age ranging from birth to 18 years reported that among 80% no etiology for epilepsy was reported. Family history of epilepsy was reported among 17.3% and parental consanguinity was in 41%, CNS infections (68%), perinatal complications (20%) and head trauma (12%) were identified in the symptomatic group. The generalized tonic clonic seizure was frequent (72.1%)and rolandic epilepsy was the most frequent type of age specific epileptic syndrome (26.4%). The study suggested that early planning for prevention and management is necessary.11
A population basedstudy was conducted among 1,675,643 children bornbetween January 1977 and December 2004 in Denmark. It was found that the mortality rate ratio was 80% higher during the first year and 90% higher during the second year after the first febrile seizures.132/100,000 children died within two years of febrile seizure compared with 67 deaths per 100,000 children without a history of this disorder.12
A study was conducted among 122parents of Turkish children between July2006 and April 2007with febrile convulsion to determine parental knowledge and practices regarding febrile convulsions. 63 parents whose children had febrile convulsion for the first time (group1) and 59 parents whose children had a recurrent febrile convulsion (group 2) completed the survey. Differences in the parental knowledge and practice regarding febrile convulsion in the two groups were tested by chi square test. It was estimated that approximately half of parents did not know what to do during febrile convulsion episode. The study suggested that significant improvement can be achieved by giving adequate information to the parents.13
Epilepsy nurses are modern day professionals who play a pivotal role in providing coordinated care and education to patients and families. A research was conducted to establish frequency and type of epilepsy, time of duration and efficacy of treatment in hospitalised children in a sample of 1505 children with epilepsy aged 1 month to 18 years between 1996 to2004. It is found that majority of cases are related to epilepsy during first two years of life and to first year duration of the illness. Continuous assessment by thepaediatric neurologists and experienced nurse teams reduces the frequency of epilepsy.14
Nurses need to educate the child and family about the nature and causes of the disorder, methods of treatment and prognosis for normal life. The nurses should be advocates for epileptic children so that they are not overly restricted by caretakers who do not understand epilepsy and the damage that can be done by unreasonable and unwarranted overprotection. Nurse can help parents to understand the importance of drug therapy and the environmental or psychological stressor that might make seizure control difficult should be explored with the family. The nurse should emphasize about regular sleeping and exercise habits as well as the avoidance of fatigue, poor diet, anxiety, blood sugar variations and various drugs.6
Epilepsy is a chronic condition with a profound effect on the quality of life. Nurse led intervention programs have a significant effect in quality of life of patients with epilepsy. By identifying and addressing the needs of epileptic children, nurse can make a difference in the care process. 15
Mother is the primary care giver and responsible for meeting the basic needs of the child. In India, other elder members of the family also contribute to childcare. The important components of child rearing are maternal activities that promote the children's physical, intellectual and psychosocial development so that they may grow up to express their full potentials. The mother has to understand the disease process, first aid measures to treat epilepsy and ways to prevent the recurrence of epilepsy.8
As there is dearth of published literature on effect of education programmes regarding care of epileptic children at home, there is a need to create awareness among mothers of epileptic children regarding causes, signs and symptoms, diagnosis, care during and after epileptic attack. Hence, the researcherfelt the need to provide education programme on home management of epilepsy to mothers of epileptic children and also to evaluate its effect.
6.2 REVIEW OF LITERATURE
- Incidence and prevalence of epilepsy in world and in India
In 2004, WHO estimated that nearly 80% of the burden of epilepsy worldwide is borne by the resource-poor countries. In developed countries, the lifetime prevalence rate for epilepsy ranges from 3.5 to 10.7 per 1,000 people per year and the incidence rate ranges from 24 to 53 per 100,000 people per year.The lifetime prevalence rates for active epilepsy varied from 1.5 to 14 per 1,000 people per year in Asia from 5.1 to 57.0 per 1,000 people per year in Latin America and from 5.2 to 74.4 per 1,000 people per year in sub-Saharan Africa. It is unclear whether these wide variations within and between geographical regions are merely apparent (that is, attributable to misdiagnosis, varying definitions of epilepsy, failure to take account of the disease activity, and/or inconsistent definitions of active epilepsy) or whether they are real (that is, related to geographically relevant risk factors such as poverty, illiteracy, poor sanitation, inaccessibility of medical care, birth-related or accident-related head trauma, and/or cerebral cysticercosis).16
As reported in a meta-analysis of data obtained from 20 community based prevalence studies on epilepsy a prevalence rate of 5.3 per 1000 person-years (95% CI 4.3-6.4) has been found in India in one of the review. In this reviewed study,through a three phase survey(screening, diagnostic and confirmation phases) in a semi urban area of the central Kerala, an age adjustedprevalence rate was found to be 4.7 per 1000 person-years. On the basis of a prevalence rate of 5 per 1000 person-years and an incidence rate of 50 per 100,000 people per year, it is estimated that at any given time in India with its population of over one billion inhabitants will have at least 5 million people with active epilepsy to which nearly 500,000 people are added annually.10
This meta- analysis also reported another study conducted by the ILAE, the IBE and the WHO which estimated the prevalence of epilepsy in rural Chinawas 4.6 per 1000 person-years. China which has a population of over 1.3 billion people, the people with epilepsy is found to be nearly 6 million. Both China and India together contribute approximately 20% of the people with epilepsy worldwide.10
A study conducted by epilepsy foundation on epilepsy and seizure statistics reports that epilepsy and seizures affect almost 3 million Americans of all ages. The report showed that 200,000 new cases of epilepsy are diagnosed each year. The incidence rate is highest under the age of two years. 45,000 children under the age of fifteen develop epilepsy each year. The prevalence rate showed that 36,000 school children through age 15 have epilepsy.17
2. Factors associated with epilepsy
Factors associated with epilepsy include birth injuries, metabolic disorders(hypoglycaemia,hypocalcemia, hyponatremia or hypernatremia and hypomagnesaemia), developmental malformations (microcephaly, porencephaly,arteriovenous fistula), intra uterine infection(TORCH), simple febrile convulsions,infections of central nervous system(bacterial meningitis, tuberculosis meningitis, aseptic meningitis, encephalitis, cerebral malaria and Reye’s syndrome), metabolic causes (dehydration, alkalosis, hypoglycaemia and dyselectrolytemia), space occupying lesions in the brain (brain abscess, cysticercosis)and drugs and poisons (toxic doses of phenothiazine, salicylate, carbon monoxide).1
A study conducted among parents of 487 children aged between 6-9years in Africa to compare the prevalence of epilepsy between three exposure groups: children with history of cerebral malaria, malaria and complicated seizures andthose unexposed to either complication. The result showed that an increased prevalence of epilepsy was seen in children admitted with cerebral malaria [9.2%, 95% CI 1.4-13.7], malaria complicated seizure [11.5%, 95% CI 2-18.3] and with the unexposed group [2.2%]. The prevalence is estimated to be between 0.5%and 1% of the general world population with an incidence between 40 and 70 per one lakh per year. 18
A cohort study conducted in children’s hospital of Eastern Ontaroio reports an analysis of risk factors for epilepsy in children with radiologically confirmed periventricular leukomalacia. Of 154 subjects, 40(26.0%) had epilepsy. The study concluded that children with cerebral palsy associated with periventricular leucomalacia will frequently develop unprovoked epileptic seizures.19
A population based cohort study was done among children born between January 1986 and December 2000 in Canada to determine the effect of pregnancy and neonatal factors on the subsequent development of childhood epilepsy. Factors analyzed included events during the prenatal, labour and delivery and neonatal time periods. The factors significantly associated with an increased risk of epilepsy included eclampsia, neonatal seizures,CNS anomalies, placental abruption, neonatal metabolic disorders, low birth infant, infection in pregnancy, small for gestational age and not breast feeding infant at the time of discharge from the hospital. There were 648 new cases of epilepsy diagnosed among 124207 live births. The study supports the concept that prenatal factors contribute to the occurrence of subsequent childhood epilepsy. 20
3. Knowledge and practice regarding home based management of epilepsy
A study was conducted to determine the knowledge, attitude and practice regarding home management of epilepsy among mothers in two communities ofSouthern Nigeria during the period of December2000 and February 2001. The findings of the study showed that 71%urban mothers compared to 25% of rural mothers express that the cause for febrile convulsion is fever and 75% of mothers from rural community and28.6% of urban mothers attributed the cause as evil spirit, 20%of urban and 22% of rural mothers use humans or cow’s urine for treating febrile convulsion at home. Other home remedies includekerosene, fuel, and crude oil. The study recommended the mass enlightenment campaign for the rural community against the harmful traditional remedies to treat febrile convulsion at home.21
A prospective questionnaire based study was conducted in a tertiary care centre in Mumbai to assess the knowledge and practices of 140 parents of children with febrile convulsion over a period of one year. The statistical analysis showed that 83 parents (59.3%), could not recognise the convulsion, 127 parents (90.7%) did not carry out any intervention prior to getting the child to the hospital. The long term concerns were fear of epilepsy(45.7%) and future recurrence(19.3%) in the affected child. Correct preventive measures were known only to 41 parents(29.2%). Result revealed that the parental fear of fever and febrile convulsion is a major problem with serious negative consequences affecting daily familial life.22
A cross sectional questionnaire survey was conducted in a hospital ofKuwait among 520 accompanying mothers of feverish children to assess their knowledge and fear of fever and home management of fever. The result of the study revealed that 81.6% of mothers believed that epilepsy can cause fever in children and approximately 60% of all mothers believed an untreated fever could lead to convulsion. The study concluded that health professionals should spent enough time with mothers attending a feverish child and provide adequate information regarding appropriate management of fever at home.23
A study was conducted in Taiwan to assess the effects of educational program on knowledge, practice and concern among parents of febrile convulsive children. The parents were assigned to experimental (n=65) and control (64) groups. After education, the experimental group showed significant improvement in knowledge, attitude, concerns and anticipatory practice of preventing febrile convulsion compared with the control group. The study concluded that the parents with poor knowledge, negative attitude and inadequate first aid measures towards febrile convulsion can be effectively educated through an educational intervention program and their knowledge and attitude can be improved.24