RAJIVGANDHIUNIVERSITY OF HEALTH SCIENCES, KARNATAKA

PERFORMA FOR REGISTRATION OF SUBJECT FOR DISSERTATION

  1. NAME OF THE CANDIDATE WITH ADDRESS :

MR. PRAVEEN.A.LONI,

1st year M.Sc (N),

J.S.S COLLEGE OF NURSING,

I Main, SARASWATHIPURAM,

MYSORE.

  1. NAME OF THE INSTITUTION :

J.S.S COLLEGE OF NURSING,

1STMAIN, SARASWATHIURAM,

MYSORE.

  1. COURSE OF THE STUDY & SUBJECT:

M.Sc Nursing

Psychiatry Nursing

  1. DATE OF ADMISSION TO THE COURSE : 11-06-07
  1. TITLE OF THE TOPIC :

“A STUDY TO ASSESS THE LEARNING NEEDS AND TO DETERMINE THE EFFECTIVENESS OF NEED BASED EDUCATIONAL PROGRAMME(NBEP) ON KNOWLEDGE AND PRACTICE REGARDING HOME MANAGEMENT OF EPILEPSY AMONG PARENTS OF EPILEPTIC CHILDREN ATTENDING OUT PATIENT DEPARTMENT OF SELECTED HOSPITALS AT MYSORE”.

6. BRIEF RESUME OF THE INTENDED WORK

INTRODUCTION:

Epilepsy is a common childhood neurological disorder throughout the world, irrespective of age, gender, colour, religion, race, and nationality. Epilepsy from ancient time to present scenario is a global problem. The epilepsy can affect anyone at anytime (1).

Epilepsy is known as a “sacred disease” because people think that epileptic seizures are due to punishment from god or due to attack by evil spirit, especially in villages of India and this leads to isolation from society(3). Stigma continues to this day, in the both public and private spheres. Also epilepsy has social impact and which is often severe, which produce isolation and loss of self-esteem. Epilepsy has found social, physical and psychological consequences.Early recognition and treatment are keys to the best possible outcome or to cure the disease(4).

Epilepsy in children affect both child and parents normal life(1).

6.1NEED FOR THE STUDY:

Hippocrates remarked that “epilepsywould cease to be considered divine the day it was understood” (3).

According WHO-2003 of an estimated 450 million people who are affected with mental and neurological disorders worldwide, around 50 million will have epilepsy(2). On a global basis, three fourths of people with epilepsy receive no treatment for their seizures(1).It is estimated that between 72 and 86 in every 100,000 children under 9 years and between 46 and 83 in every 100,000 children under 14 years suffer from Epilepsy(2).

Epilepsy knows no geographical, racial or social boundaries, anyone can get epilepsy at anytime. It occurs in men and women. 20% of cases develop before the age of five. 50% develop before the age of 25(1).

TheIndian Epilepsy Association felt the importance of prevention and management of epilepsy, so in Indore General Body Meeting was conducted by Indian Epilepsy Association on 17th Dec 1990 and it was decided to have 17th November every year as the National Epilepsy Day(5).In up to 70% of people, epilepsy responds to treatment, but in developing countries, three-fourths of people with epilepsy may not receive the treatment they need(1).

One of the biggest challenges for parents when a child has epilepsy to help the child maintain self-esteem. Studies comparing children with epilepsy with children who have other chronic health conditions, such as asthma or diabetes, show that having seizures has a more negative effect on how children feel about themselves(6).

Studies also show that the way parents feel about the epilepsy has a major effect on how the child feels about having epilepsy and copes with their effects. Families that are open and accepting, and help the child build on strengths, can make a positive difference in the child's life.

Generally the parents of epileptic children have to face so many myths for eg:epilepsy is caused by evil spirits,it affects only those who have committed sins, the poor and those living in rural areas, epilepsy patients should be taken to sorcerers and faith-healers for treatment, epilepsy is contagious, children with epilepsy should not be sent to school, women with epilepsy should not marry or have children, the patient swallows his/her tongue during seizure, people with epilepsy look different, seizures are severe during new/full moon days, a seizure can be contained by making the patient inhale pungent odors, or, place a key in the patient’s hand, there is no permanent cure for epilepsy and the number of people living with epilepsy is increasing(6).

Also the parents of epileptic children frequently ask some questions likewise epilepsy a common condition, convulsions and fits the same as epilepsy, epilepsy is preventable, is there an association between & sleep and epilepsy, what are the types of epilepsy, is epilepsy curable, what triggers epilepsy, should people with epilepsy follow a specific diet, does epilepsy affects Childs education, can a epileptic child take part in sports, how the parents should cope with their child's epilepsy and how can parents help children cope with epilepsy. It has been shown that children with epilepsy are at increased risk of developing behavioural and emotional problems(6).

We need to recognize that epilepsy is a brain disorder. It is a treatable condition like any other disease, such as diabetes mellitus or heart disease. Patient with epilepsy deserve to live a normal and fulfilling life like others(6).It is very important for the parents of the children to know the facts, myths and management of epilepsy.

There is a dearth of literature on epilepsy in Indian population and published data on management of epilepsy among parents of epileptic children. Hence this study is an attempt to assess the learning needs and todetermine the effectiveness of Need Based Educational Programme (NBEP) on knowledge and practice regarding home management of epilepsy among parents of epileptic children. So that children can grow effectively and parents may lead a qualitative life.

6.2 REVIEW OFLITERATURE:

A research study determines the impact of the Children's Epilepsy Program onparents which was aimed to test the efficacy of the Children's Epilepsy Program, a child-centered, family-focused intervention developed and pilot tested using a counseling model for parents of children with seizure disorders to help them (a) deal with their anger, resentment, and grief related to the loss of a normal child; (b) increase their knowledge about caring for their child; (c) reduce anxieties related to having a child with a seizure disorder; and (d) improve their decision making skills. Pretest and then retested after 5 months was taken from the parents after the educational interventions. Parents in the experimental group (n = 185) and their children separately attended four 1 A-h sessions and then met together at the end of each session to share learning experiences. Comparison group parents (n = 180) and their children jointly attended three 2-h lecture sessions followed by question-and-answer periods. Although parents' overall knowledge of epilepsy was relatively high initially, it improved considerably in both comparison and experimental groups. With regard to anxiety, at the 5-month evaluation, experimental group parents and mothers in particular were more likely than control parents to state that they were less anxious (p < 0.001), and their anxiety, as measured by the Taylor Manifest Anxiety scale, was significantly reduced (p < 0.01)(7).

A survey conducted on school teachers knowledge and behaviour about epilepsy. The aim of this study was to evaluate teachersknowledge, awareness, and current attitudes about epilepsy in order to obtain baseline data for the development of a school health education program on epilepsy.A questionnaires was given to400 elementary school teachers, but only 373 teachers (93%) completed the questionnaires. Data were analyzed & findings revealed that 69%, epilepsy arises in the brain, 28.7% is a sub natural affliction. Epilepsy was considered to be contagious for 24% and could be cured for 73%. Although 66% teacher would help an epileptic pupil during a seizure but 53% mentioned harmful measures. 84% noticed that an epileptic child could go to a normal classroom, while 62.5% would prefer a special school. It also expressed by 99% teacher that they require training on epilepsy while 84% said they have inadequate knowledge about epilepsy. 25.7% teacher also reported that better collaboration between parents, doctors, and teachers would be helpful to achieve better management of epileptic children(8).

A cross sectional was conducted on knowledge, attitude and beliefs about epilepsy among adults.The purpose of study was to examine the knowledge, attitude and beliefs about causes, manifestations and treatment of epilepsy. A semi-structured questionnaire was administered to 200 adults & data were analyzed.Findings revealed that 39% respondents expressed that epilepsy is manifested by convulsions. Other manifestations like falling down (36.0%), rolling of eyes (11.3%) and foaming of mouth (10.3%). It also found that 25.2% of respondents did not know about the cause of epilepsy but heredity(19.9%) was identified as a cause of the epilepsy followed by brain injury (19.2%), possession by evil spirits (16.3%) and brain infection (11.7%). Overall (n=52, 26%) of the respondents had good knowledge of epilepsy whereas (n=62, 31%) and (n=86, 43%) had fair and poor knowledge of the disease respectively. Majority of respondents (47.0%) opted for spiritual healing followed by orthodox medical care (34.0%) and the use of traditional herbal medicines (19.0%). Majority of respondents harboured positive attitudes such as tolerance, kindness and sympathy towards epileptics. Literate respondents were more likely to exhibit positive feelings towards epileptics when compared to non-literate subjects (χ2 = 31.5 df = 1 P< 0.001)(9).

A clusterrandomized trail study was conducted among grade 5 students to evaluate epilepsy education programme. A total 783 students selected randomly from 24 different schools. Results revealed that experimental group gained knowledge with an average 11.8 points compared with control group (2.2 points) among intervention group there was significant increase in mean score (8.15 points) in attitude in comparison with control group (1.64 points) out of a total 50 points. Study concluded that education programme is an effective intervention to increase knowledge and positive attitude among grade 5 students (10).

A study was conducted to explore the concerns and Needs of Children with Epilepsy and their Parents.This study was aimed to explore the factors that often interferes with a child's having epilepsy and his or her family's quality of life and also explore in-depth the self-reported concerns and needs of children with epilepsy and their parents. A focus group methodology was used with 2 child groups and 2 parent groups. Themes were independently identified by each investigator, who then met to discuss the themes until 100% agreement was reached. Child themes included "talking at my level" and "feeling different from others." Parent themes included "difficulties, struggles and problems," "need for information," and "fears and concerns"(11).

An exploratory study of an health education programme on epilepsy was conducted for teachers, which evaluated the knowledge and attitudes regarding epilepsy of teachers. A questionnaire was distributed to 165 teachers who attended the workshop of awareness on epilepsy and data were analyzed. Findings revealed that 89% teachers heard or read about epilepsy, while 70.6% observed an epileptic seizure. Epilepsy was considered hereditary disease by 34.6%, followed by form of insanity (12.6%), evil spirits(0.6%) ,contagious(22.6%). It also found that 82% would allow their child to play with an epileptic child, 76% would marry an epileptic while 55.7% would employ an epileptic. The majority of teacher would accommodate an epileptic and teach an epileptic child in class.

6.3 OBJECTIVES

STATEMENT OF THE PROBLEM:

“A STUDY TO ASSESS THE LEARNING NEEDS AND TO DETERMINE THE EFFECTIVENESS OF NEED BASED EDUCATIONAL PROGRAMME(NBEP) ON KNOWLEDGE AND PRACTICE REGARDING HOME MANAGEMENT OF EPILEPSY AMONG PARENTS OF EPILEPTIC CHILDREN ATTENDING OUT PATIENT DEPARTMENT OF SELECTED HOSPITALS AT MYSORE”.

OBJECTIVES:

1)To assess the learning needs of parents of epileptic children regarding home management of epilepsy.

2)To assess the knowledge of parents of epileptic children regarding home management of epilepsy before and after administration of Need Based Educational Programme (NBEP).

3) To assess the practices of parents of epileptic children regarding home management of epilepsy before and after Need Based Educational Programme (NBEP).

4)To determine the effectiveness of Need Based Educational Programme (NBEP) regarding home management of epilepsy in terms of gain in knowledge and practice scores of parents of epileptic children.

5)To find the relationship between knowledge and practice regarding home management of epilepsy among parents of epileptic children.

6)To find the association of level of knowledge and practice of parents of epileptic children regarding home management of epilepsywith their selected personal variables viz age, gender, educational status, religion, occupation, type of family, income per month, residential area, any previous health education attended with regard to home management of epilepsy and any related previous exposure through mass media.

  • CONCEPTUAL/THEORETICAL FRAMEWORK:

Health Belief Model – Rosenstock (1974), becker and miamen(1975).

  • OPERATIONAL DEFINITIONS :

1) Effectiveness: It refers to the extent to which the NBEP has helped in developing the parents knowledge and practice regarding home management of epileptic children, as measured by structured knowledge and practice interview schedule and expressed interms of gain in knowledge and practice scores.

2) Learning Need:refers to the response of parents of epilepticchildren as“necessary”and “desirable” to item included in the structure learning assessment interview schedule regarding home management of epilepsy.

3) Need Based Educational Program(NBEP): it refers to 2 hrs programme of instruction and discussion regarding home management of epilepsy , to be developed based on learning needs of parents of epileptic children and conducted by the researcher.

4) Knowledge:refers to what amount of information the parents of epileptic children have regarding home management consisting of do’s and don’ts, care during seizures and medication of epilepsy, which is measured in terms of correct response to the item given in structured knowledge interview schedule.

5) Practice:refers to the steps taken by parents of epileptic children in caring for their epileptic child during epileptic attack at home as measured by structured practice interview schedule.

6)Parents:refers to either father or mother of epileptic children less than 14 yrs old andwho are responsible for attending to the needs of the epileptic children.

7) Epileptic Children:refers tochildren less than 14 yrs oldand who havebeendiagnosed as having epilepsyand attending the Out PatientDepartment of the selected hospitals.

8)Home Management of Epilepsy: refers to correct caring steps to be followed during epileptic seizures and do’s and don’ts to follow, medication among epileptic children by their parents in home settings.

  • HYPOTHESES :

H1:Mean post-test knowledgescore of parents of epileptic children who have received Need Based Educational Programme (NBEP) regarding home management of epilepsy will be significantly higher than their mean pre-test knowledge score.

H2: Mean post-test practice score of parents of epileptic children who have receivedNeed Based Educational Programme (NBEP) regarding home management of epilepsy will be significantly higher than their mean pre-test practice scores.

H3: There will be a significant association between level of knowledge regardinghome management of epilepsyamong parents of epileptic childrenand their selected personal variables viz. age,gender, educational status, religion, occupation,type of family, income per month & residential area, any previous health education attended with regard to home management of epilepsy and any related previous exposure through mass media..

H4: There will be a significant association between levels of practice regardinghome management of epilepsy among parents of epileptic children and their selected personal variables viz. age, gender, educational status, religion, occupation, type of family, income per month & residential area, any previous health education attended with to regard home management of epilepsy and any related previous exposure through mass media..

H5: there will be significant relationship between knowledge & practice scores regarding management of epilepsy among parents of epileptic children.

  • ASSUMPTIONS:

1)Parents of epileptic children willbe interested and motivated to know more about home management of epilepsy.

2)Need Based Educational Programme (NBEP) could be an effective strategy in improving knowledge & practice of parents regarding home management of epilepsy.

  • DELIMITATIONS:

This study is delimited to the parents of epilepticchildren attending OPD of selected hospitals atMysore during the data collection period.

7 MATERIAL AND METHODS

  • RESEARCH DESIGN:

Pre-Experimental one group pre-test – post-test design will be used for the study.

(O1 X O2 O3)

Key: O1 = Pre-test

X = Need Based Educational Programme (NBEP)

O2 = Post –test-1

O3 = Post – test-2

  • VARIABLES:

a) Independent Variable:Need Based Educational Programme (NBEP) regarding home management of epilepsy.

b) Dependent Variable: Knowledge & practice of parents of epileptic children regarding home management of epilepsy.

c) Other Variable : Selected personal variables viz. age, gender,educational status, religion, occupation, type of family,income per month & residential area, any previous health education attended with regard to home management of epilepsy and any related previous exposure through mass media.

7.1 SOURCES OF DATA:

SETTING : Out Patient Department of selected hospitals at Mysore.

POPULATION : in this study population include parents of epileptic children attending OPD of selected hospitals at Mysore.

7.2 METHOD OF DATA COLLECTION

SAMPLE & SAMPLING CRITERIA

SAMPLE: Parents of epileptic children who are attending OPD

INCLUSION CRITERIA

1) Parents of epileptic children who are attending OPD during the data collection period and are willing to participate in the study.

2) Those who can communicate in kannada and / or English

EXCLUSION CRIETRIA :

1)Parents of epileptic children, who have any severe physical and mental problems.

2)Parents with hearing impairment.

SAMPLING TECHNIQUE:

Non-Probability Purposive Sampling.

SAMPLE SIZE : 80 parents of epileptic children

DATA COLLECTION TECHNIQUE:

Structuredknowledge interview schedule and structured practiceinterview schedule regarding home management of epilepsy.

METHOD OF DATA COLLECTION:

Day 1 = (O1) pre-test (assess the learning needs)

Day 10 = (X) need based education program

Day 10 = (O2) post-test

Day 20 = (O3) post-test

PLAN OF DATA ANALYSIS :

The data will be analysed by Descriptive & Inferential statistics.

a) mean, median, standard deviation & range will be computed to analyze the knowledge & practice score