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RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES,
BANGALORE, KARNATAKA
PROFOMA FOR REGISTRATION OF SUBJECT FOR DISSERTATION
1 NAME OF THE CANDIDATE
MS. LIGI ALEX1ST YEAR M.Sc NURSING,RAJIV GANDHI COLLEGE OF NURSING,IIT CAMPUS, OPP. MEENAKSHI TEMPLE,BANNERGHATTA ROAD,BANGALORE – 76.
2 NAME OF THE INSTITUITION RAJIV GANDHI COLLEGE OF NURSING
3 COURSE OF STUDY AND SUBJECT
1ST YEAR MSC NURSING CHILD HEALTH NURSNG
4DATE OFADMISSION TO COURSE
28/09/2009
5 TITLE OF THE TOPIC
A STUDY TO EVALUATE THE EFFECTIVENESS OF STRUCTURED TEACHING PROGRAMME ON KNOWLEDGE AND ATTITUDE AMONG MOTHERS OF UNDERFIVE CHILDREN REGARDING AUTISM IN A SELECTED URBAN SCHOOL, BANGALORE WITH A VIEW TO DEVELOP A SELF INSTRUCTIONAL MODULE.
1
6.BRIEF REVIEW OF THE INTENDED WORK
INTRODUCTION
“For autistic people, there is light at the end of the tunnel. The tunnel is long and the light is dim. But the glimmer beckons.”
The beginning and formation of life is the miracle of god. Some children born with mental retardation,
some with disabilities, some with malformations. These children need special care and guidance from
parents to lead a normal life because they have fundamental difficulty in accomplishing things that
others take for granted.
Autism is a disorder of neural development characterized by impaired social interaction and
communication and by restricted and repetitive behavior.3 These signs will begin before a child is
three years old. Autism affects information processing in the brain by altering nerve cells and their
synapses.17
Autism was identified by Leo Kanner in 1943,asserting he had notice such children since
1938.15.Kanner observed that these children often demonstrated capabilities that showed that they
were not merely slow learners , yet they didn’t fit the pattern of emotionally disturbed children. Thus
he invented a new category which he called Early Infantile Autism.14 The word autism was first used
by Eugen Bleuler in 1912 which means “escape from reality.” and later Kanner borrowed Bleuler’s
term because Kanner indeed believed the children were trying to escape from reality.16
According to different studies conducted during the time period of 2008 to 2009 in different countries
the geographical frequency of autism is increasing. The results of the studies includes:
COUNTRY PREVALANCE
AUSTRALIA 1.21 to 3.57 per 1000
CHINA 1.68 per 1000
DENMARK 4.5 per10000
GERMANY 1.3 to 1.4 per 1000
ISRAEL 190 per1000,000,0
2
JAPAN 48 per 10000
NORWAY 0.21 to 0.87 per 1000
SAUDIARABIA 18 per 10000
UNITED KINGDOM 0.11 to 2.18 per 10000
USA 8.6 to 9.3 per 1000
VENEZULA 1.1 to 1.7 per 1000
INDIA 4.5 to 7.55 per 1000
Source: http://www. emedicinehealth.com/autism/page18 em.html 44
According to a study conducted by The society for autistics in Bangalore in 2009 suggests that the
prevalence of autism in Karnataka is increasing per year. According to that study the no of autistic
children in Karnataka is 116 per 100000 population.37
The actual causes of autism have not yet been discovered, but there are some theories that are believed
to be the cause. It is believed to be a disorder which is caused by some brain abnormalities which
results in damage to mental developments. There have been speculations of several autism causes
which include genetic factors of the environment such as heavy metals, vaccines, pesticides, viral
infections, metabolic disorders, pregnancy and delivery complications. Researchers suspect that it may
be a combination of several unstable genes that present this risk. There has been some co-relation
between autism and individuals with other disorders or diseases such as Tubercular sclerosis,
Phenylketonuria, Fragile x syndrome and Congenital rubella syndrome.37
Autism has a strong genetic basis ,although the genetics of autism are complex and it is unclear
whether autism is explained more by rare mutations or by rare combinations of common genetic
variants.1In rare cases autism is strongly associated with agents that cause birth defects.4
A recent meta analysis of 37 prevalence studies of autism reported from USA, UK, European
countries and Japan has estimated that the prevalence of autism is 7.1 per 10000 in individuals under
18 years of age31. Overall boys are affected more often than girls and the average male: female ratio is
3.8-1.In recent times in the USA and UK, population studies had suggested that the prevalence of
autism has increased two to three times over the last three decades 33, 12 .A recent study estimates that
there are 2-6 cases of autism per 1000 and it is growing at the rate of 10-17 % per year. Given current
epidemiologic estimates, there are approximately 1.7 million individuals with autism in India30.
3
Parents of young children with autism play multiple roles in their children life. So many demands on
parents occur in the context of family life, including the needs of other children, the parents as
individual and as a couple and family needs as a whole. Parents may recognize that their child is
different from others of the similar age but be unable to articulate this difference. Parents can be
supported and taught ways to assist their child that are specific for each sphere of the baby’s
development.
A recent study conducted by Autism Research centre, Cambridge university proved that autistic
children trained by parents made more progress in language development and a study conducted in
UK proved that the autistic children receiving parent managed intensive interventions improved in
mental age, adaptive behavior and language. So the parents of autistic children should be given proper
education regarding management of autistic children.30
6.1. NEED FOR THE STUDY:
“Millions of live could be saved by using the knowledge
what we have today. The challenge is to transform this knowledge into action”.
According to a recent study conducted by Autism Society of India there are over 40 lakh persons with
autism in India using the prevalence figure of 1/250. Statistics from Autism Society of India shows
that boys are affected more than girls and the ratio is four males to one female.
According to a study conducted by Child Development Center, Thiruvanathapuram, Kerala in 2008,
there are approximately 1.7 million individuals with autism in India. According to the UN statistics
released on World Autism Day on April 2nd, 2009 show that irrespective of rationality and ethnicity,
one in 150 is estimated to be autistic.” if you go by these statistics , there may be as many as six
million autistic people in India”, says S. Saleem Ahmed, secretary of The Society for Autistics in
Bangalore37.
4
According to the Autism Society of America approximately 67 million people are affected by autism
around the world and the estimated number of individuals with autism in 2009 is :
COUNTRY NUMBER DATA SOURCE
CHINA 1100000 (1.1/1000) PELKING HEALTH
SCIENCE CENTRE
INDIA 2000000 (1/250)
(HIGHEST PREVALENCE)
ACTION FOR AUTISM IN
INDIA
USA 150000 US CENTER FOR DISEASE
CONTROL
UK 650000 (1/100) NATIONAL AUTISTIC
SOCIETY
MEXICO 150000 (2-6/1000) MINISTRY OF HEALTH
THAILAND 180000 MINISTRY OF HEALTH
PHILIPPINES 500000 AUTISM SOCIETY OF
PHILIPPINES
Source: JAMA magazine 2003;157:622-7 34
According to a study conducted by Mental Retardation and Developmental Disability Research
Centre in 2002 reported annual rises in incidence of autism in under five children based on age of
diagnosis and increases in the age specific prevalence rates in children. Prevalence rates of up to 60
per 10,000 for autism were reported35.
While the World Health Organization does not maintain global statistics on the prevalence of autism
spectrum disorders or appropriate treatments specifically; its report on global burden of disease due to
neuropsychiatric disorders is projected to rise to 14.7% by 2010 36.
According to the study conducted by Center for Disease Control and Prevention, USA shows that
between 1 in 80 and 1 in 240 children has autism. That’s about 1 in 110 children and the estimated
5
prevalence ranging from 27% to 95%, with an average increase of 57% from 2002 to 2006 and if four
million children are born in the US every year , approximately 36500 children will eventually be
diagnosed as with autism spectrum disorders. So we can estimate that about 730000 individuals
between the ages of 0 to 21 have autism. They found out that according to studies in Asia, Europe and
north America the approximate prevalence of autism is 0.6%to over 1%.
In October 2007 officials from the National Institute of Mental Health published result of a 2007
telephone survey of parents, that concludes that 1 in91 children had autism. At the same time the
Center for Disease Control released to the media preliminary results of 1 in 100 from its own
research.38
Children with autism vary according to individual personality and abilities and are affected by their
environment. The early signs and symptoms are subtle and vague. Parents should understand this
problem and try to bring up their children. One 2008 US study found a 14% average loss of annual
income in families of children with autism and a related study found that autism is associated with
higher probability that child care problems will greatly affect parental employment. Most families
cope effectively with these demands, but some may encounter very substantial stress as they raise
their children with autism. In order to provide an appropriate education for their child, parents of
children with autism need specialized knowledge and skills and scientifically based information about
autism and its treatment but most parents especially mothers lack this knowledge.45
There is no single best treatment package for all children with autism. One point that most
professionals agree on is that early intervention is important28 Parental involvement has emerged as
a major factor in treatment success. Parents should work with teachers and therapists to identify the
behaviors to be changed and skills to be taught. Recognizing that parents are the child’s earliest
teachers more programs is beginning to train parents to continue the therapy at home7. Collaborations
between parents and children are essential to improve the children’s development. So the parents
should be educated first regarding autism and the management of children with autism so that they can
take care of them properly8.
As an investigator, I have a personal experience in my family. One of my relative have an autistic
6
child who is 15 years old and very aggressive. She told me that proper guidance and education of the
parents regarding autism will help them to take care of their autistic children properly and she still
believes that, her lack of knowledge regarding autism affected the development of her child. So
investigator felt that there is a need to educate mothers of autistic children to improve the care given to
them at home. The researcher thought that if knowledge level of mothers is improved, the care given
by them for their autistic children also will increase.
. 6.2 REVIEW OF LITERATURE:
Review of literature is a key step in the research process. It is an extensive, exhaustive and systemic
examination of publications relevant to research project. It involves the identification, selection,
critical analysis, and reporting of existing information on the topic of interest. A review acquaints the
researcher with that has been done in the field and it minimizes the possibility of unintentional
duplications. It establishes need for study, methodology, development of tool and structured teaching
programme. In the present study, the review of literature has been classified into two categories:-
1. Literature related to autism.
2. Literature related to studies conducted on autism, its prevalence and causes.
3. Literature related to studies conducted on management of autism and
effectiveness of structured teaching programme on knowledge and attitude of
mothers with autistic children.
LITERATURE RELATED TO AUTISM:
Autism is a bioneurological disorder that is observable in early childhood with symptoms of abnormal
self absorption characterized by lack of response to other human and by limited ability or
disinclination to communicate and socialize .Other symptoms includes avoiding eye contact, sensory
integration dysfunction and restricted and repetitive behaviors such as stims.34
Autism’s symptoms result from maturated related changes in various systems of the brain. How
7
autism occurs is not well understood.2 Autism appears to result from developmental factors that affect
many or all functional brain systems and to disturb the timing of brain development more than the
final product.20 Just after birth the brains of autistic children tend to grow faster than usual, followed
by normal or relatively slower growth in childhood.9
Some aberrant interactions between immune and nervous system during embryonic period can cause
some abnormalities in autistic individuals.5 The relationship between neurochemicals like serotonin
and autism is not well understood but it plays some role in autistic individuals.16 Also, some inborn
errors of metabolism are associated with autism but probably account for less than 5% of cases.20
The main goals when treating children with autism are to lessen associated deficits and family
distress and to increase quality of life and functional independence. No single treatment is best and
treatment is typically tailored to child’s needs. Families and the educational systems are the main
sources for treatment. Studies of interventions have methodological problems that prevent definitive
conclusions about efficacy.16
LITERATURE RELATED TO STUDIES CONDUCTED ON AUTISM, ITS PREVALENCE AND
CAUSES:
According to a large scale, two phase study conducted by Action for Autism in New Delhi, India in
2009 suggests that India could have more than 2 million people with autism; this has never been
directly tested. The current project represents a large scale attempt to estimate the prevalence of
autism in India ,by focusing on three major cities in India.29
In January 2008, the results of a study where released announcing that a genetic variation was found
on the 16th chromosome of the children with autism. This variation was not found in either of the
child’s parents DNA. So leading researchers now support the idea that a genetic anomaly may be the
cause of some cases of autism.39
According to a study published in a newspaper ‘New York Times’ in December 2009, nearly 1 in 100
American children struggle with autism. The finding was based on an analysis of medical and school
records of some 400,000 children around the country and the prevalence estimates for these disorders
8
have increased so sharply in recent years to 1 in 150 in 2007 from 1 in 300 in the early 2000s.Yet that
study, based on the phone survey of 78000 households, also found out that almost 40% of children
who had received autism spectrum diagnosis grew out of it or no longer had the diagnosis.36
Most recent reviews of epidemiology estimate a prevalence of one or two cases per 1000 people for
autism.3 Autism averages 4.3-1 male to female ratio. The number of children known to have autism
has increased dramatically since the 1980’s, at least partly due to changes in diagnostic practice.16
Estimates of the prevalence of autism vary widely depending on diagnostic criteria, age of children
screened and geographical location. Most recent reviews tend to estimate a prevalence of 1-2 per 1000
for autism.12
A 2006 study of nearly 57000 British nine and ten year olds reported a prevalence of 3.89 per 1000
for autism.25 Studies based on more detailed information such as direct observation rather than
examination of medical records; identify higher prevalence; this suggests that published figures may
underestimate autism’s true prevalence.16
A 2009 study of the children in Cambridgeshire, England used different methods to measure the
prevalence and estimated that 40% of cases go undiagnosed with the two least-biased estimates of true
prevalence being 11.3 and 15.7 per 1000. 23A 2009 study in US based on 2006 data estimated the
prevalence of autism in children to be 9 per 1000.8 Earlier prevalence estimates were lower, centering
at about 0.5 per 1000 for autism during the 1960’s and 1970’s and about 1 per 1000 in the 1980’s as
opposed to today’s 1-2 per 1000.3
According to a recent study conducted in India, genetics explains more than 90% of autism cases. 3
Family studies have provided strong evidence that genetics plays a major role in conferring
susceptibility to autism.9 Recent research suggests that more than ten genes contribute to the
underlying genetic risk of developing autism.38
Based on a study conducted by National Autistic Society in 2008, they found out few theories that
can explain the causes of autism. It includes:
- The causes of autistic behaviors arise very early in pregnancy even in the first few weeks.
- While it is true that this disorder sometimes run in families, it isn’t purely genetic.
- One possibility is that something happens in the womb, which interacts with a gene- and
9
the result is a child with an autism spectrum disorder.
- For instance, is there evidence that the mothers of children with particular autistic traits
were exposed to infections more often in pregnancy than mothers of unaffected children.
- A number of possible causes have been suggested mainly related to involvement of
environmental factors.37
Numerous studies have been released both supporting the claim that some individuals do have vaccine
induced autism. In 2007, the world watched as parents in the US testified in a landmark case that
vaccines were directly responsible for their child’s condition. Epidemiological studies and related
evidence do not support a casual link between MMR vaccination and Thimerosal with autism.39
LITERATURE RELATED TO STUDIES CONDUCTED ON MANAGEMENT OF AUTISM AND
THE EFFECTIVENESS OF STRUCTURED TEACHING PROGRAMME ON KNOWLEDGE AND
ATTITUDE OF MOTHERS WITH AUTISTIC CHILDREN:
According to a study conducted by the Action for Autism, India in 2008 March concluded that with its
social attitudes, governmental reluctance to accept the disorder and environmental conditions. India
has many barrier to providing high quality education and treatment to children with autism. However,
if the country’s acceptance of the UN convention on rights of persons with disabilities and the
“Nirmaya program (to provide health insurance coverage to persons with autism) are any indication,
India is taking some steps in right direction.48
According to a study conducted by Michelle Lewis Macalphine of brain training associates among 20
children selected from USA and Italy in 1973 on effects of traditional treatments for treating autism
by treating a related pathology of the immune, endocrine, or sensory systems was found effective. The
methods they used to treat includes approaches like the use of immunoglobulin’s, dialyzable
lymphocyte extract, secretin, B6 and magnesium rich diets that eliminate gluten and casein, ascorbic
acid therapy, auditory and sensory integration therapy and music therapy.21
According to a study conducted by Chabrol, Bonnet and Roge in 1996 concluded that although drug
therapies can show statistically significant affects for certain behaviors, in general they have not been
effective in changing either the course or the symptoms of autism.6
10
According to a study conducted by Lovas in 1987 to find the effect of behavioral therapy program on
autistic children concluded that behavioral therapy can improve autistic children. He examined thE
records of 30 children who had been enrolled in an intensive behavior therapy program for autistic
children over a period of 12 to 14 months.19Lovas was able to demonstrate a therapeutic effect for his
techniques: a 10% reduction in self stimulation behaviors, a 3-10% increase in appropriate verbal
responses, and social non verbal acts and a 20% increase in the incidence of appropriate play.18
According to a study conducted by Lovas, Koegel, Simmons, Long in 1973 in 20 children who had
participated in a treatment program for autism four years back concluded that those children whose
parents had been trained in follow up treatment continued to improve, whereas children returned to
untrained parents had lost their previously acquired skills.20
According to study conducted on evaluation of parent training programme for parents of autistic
children by Gary Mesibov and Ann Baker in 2009 suggested that training program even can change
the parent’s attitude towards their autistic children. Parents who underwent the training programme
expressed improvement in their knowledge level after training programme on management of autistic
children.11
According to 58 parents of autistic children who received diagnostic and treatment services from
several of the TEACCH centers for duration of 1 to 2 years responded that the training was very good
and they were able to gain adequate knowledge from the training programme. According to a study
conducted by Eric Schopler of the University of North Carolina at Chapel Hill in 2008 among 65
mothers after a teaching programme on autism suggested that there was a 55% improvement in post
test knowledge scores than pre test knowledge scores.47
6.4.OBJECTIVES OF THE STUDY
To assess the knowledge of mothers with under five children regarding autism before
and after structured teaching programme.
To assess the attitude of mothers with under five children regarding autism before and
after structured teaching programme.
To analyze the effectiveness of the structured teaching programme regarding autism
11
among mothers of under five autistic children.
To analyze the effectiveness of the self instructional module regarding autism among
mothers of underfive autistic children.
To determine the association between knowledge and attitude of mothers with under
five children and selected socio-demographic variables.
6.5.STATEMENT OF THE PROBLEM
A study to assess the effectiveness of structured teaching programme on knowledge and
attitude of mothers of underfive autistic children regarding autism in a selected urban
school in Bangalore with a view to develop a self instructional module.
6.6.OPERATIONAL DEFINITIONS:
o STUDY: A work, such as a thesis, that results from studious endeavor.
o EVALUATE: To examine and judge carefully the quality, importance and impact of
the structured teaching programme and self instructional module regarding autism
on mothers with under five autistic children.
o EFFECTIVENESS: It is the significant gain in knowledge and attitude of mothers of
under five children with regard to autism as evidenced by the differences in pretest
and posttest scores.
o STRUCTURED TEACHING PROGRAMME: A teaching programme prepared and
by the investigator about autism to enhance mothers awareness about autism and
management of autistic children.
12
o KNOWLEDGE: It is the written response of mothers of under five children to the
items of the structured knowledge and attitude questionnaire on autism.
o ATTITUDE: It refers to the change in the thinking or behavioral approach of mothers
regarding autism.
o MOTHERS :In this study mothers refers to mothers having under five children
studying in a selected urban special school, Bangalore
o AUTISM: Autism is a disorder of neural development characterized by impaired
social interaction and communication and by restricted and repetitive behavior
attending selected urban special school, Bangalore.
6.7.ASSUMPTIONS
Mothers will have some knowledge of autism.
Standard teaching programme will enhance the knowledge and attitude of mother
regarding care of autistic children.
Mothers have negative attitude regarding care of autistic children.
The mother would co-operate with investigator and would be willing to express their
knowledge regarding autism.
6.8.HYPOTHESIS
On the basis of objectives and the review of literature the following research hypothesis
have been formulated.
H1: There will be a significant relationship between pretest and post test knowledge
scores of mothers of under five autistic children.
H2: There will be a significant relationship between the pretest and posttest attitude
scores of the mothers of under five autistic children.
13
H3: There will be a significant change in pretest and posttest scores after structured
teaching programme.
H4: There will be a significant difference between the knowledge and attitude of
mothers of under five autistic children before and after implementation of a
structured teaching programme on autism.
H5: There is an association between the effectiveness of self instructional module
and the knowledge and attitude of mothers regarding autism.
H6: There is an association between knowledge and attitude of mothers with socio
demographic variables.
6.9.DELIMITATIONS
The study is limited to mothers :
Who can read and write Kannada and English.
Willing to participate in the study.
Available at the time of data collection.
Having under five autistic children studying in the selected special school, Bangalore.
7. MATERIAL AND METHOD
7.1 SOURCES OF DATA:
Data will be collected from mothers of under five autistic children by using a structured
knowledge and attitude questionnaire.
7.1.1 RESEARCH DESIGN:
14
The plan or organizations of a scientific investigation design have the ability to
introduce random exposure into data collection procedure in order to generalize study
findings. One group pretest posttest experimental design was chosen for conducting the
study, where there is no randomization or control group. In this design all he subjects
will be given a pretest then posttest will be given to the same group after the
experimental test.
7.1.2 SETTINGS:
The study will be conducted in a selected urban special school in Bangalore.
7.1.3 POPULATION:
“An aggravate or totality of all subjects, that possess a set of specification.
The target population is the group of population that the researcher aims to study and to
whom the study findings will be generalized, the target population comprises of all the
mothers of under five children.
The accessible population in this study will be all mothers of under five autistic
children studying in a selected special school, Bangalore.
7.2 METHODS OF DATA COLLECTION:
Data collection is the gathering of information from the sampling units. Structured
knowledge and attitude questionnaire provides greater opportunity to have face to face
contact and would encourage the subjects to give free and frank information. It will
also help to collect complete information from all the subjects. Structured interview
questionnaire was found to be appropriate, thus it will be developed and used for data
collection.
7.2.1 SAMPLING PROCEDURE:
15
“Sampling consists of a subset of the units comprise the population.”
Sampling is the process of selecting a portion of the population to represent entire
population. Simple random sampling techniques will be used for selecting the sample.
For this purpose, all the mothers of under five autistic children will be listed out
separately from selected special school, Bangalore and 30 mothers will be chosen as a
sample by using lottery method.
7.2.2 CRITERIA FOR SAMPLE SELECTION:
7.2.3 INCLUSION CRITERIA:
1. Mothers of under five autistic children studying in selected special school,
Bangalore.
2. Mothers of under five autistic children who are available during the duration
of study.
3. Mothers of under five autistic children who are willing to participate.
4. Mothers of under five autistic children who can understand Kannada
and English.
7.2.4 EXCLUSION CRITERIA:
1. Mothers who don’t have under five autistic children.
2. Mothers of under five autistic children who are not available during the
duration of study.
3. Mothers of under five autistic children who are not willing to participate.
4. Mothers of under five autistic children who are illiterate.
7.2.5 INSTRUMENTS INTENDED TO BE USED:
16
The instruments in this study consist of:
1. Structured knowledge questionnaire:
It consists of 2 parts:-
- Part one- Demographic data.
- Part two- Structured knowledge questionnaire on autism. 2. Structured attitude questionnaire.
7.2.6 PLAN FOR DATA ANALYSIS:
The data obtained would be analyzed in terms of objective of the study using
descriptive and inferential statistics.
-The analyzed data would be presented in tables and figures.
-Demographic characteristics would be analyzed by frequency and percentage.
-Description of would be analyzed using descriptive inferential statistics.
7.3. Does this study require investigation or intervention to be conducted on
patients or other human beings or animals?
Yes, the study will be conducted among mothers having under five children.
7.4. Has ethical clearance been obtained from your institution incase of 7.3 ?
Yes, prior written permission order has been obtained the authorities prior to the
conduction of study.
17
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19
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9. Signature of the Candidate
10. Remarks of guideThe prevalence of autism in India 1/250 according to statistics and it is higher than all other countries. Hence there is a need to conduct a study on autism and educate mothers regarding care of autistic children.
11. Name and designation
11.1 Guide
Mrs. Susen Shaila Abraham
Associate Professor
11.2 Signature
12. Head of department Mrs.Susen Shaila Abraham
Associate Professor
13. Signature
14. Remarks of principalThis study is feasible to conduct, since autism is becoming an emerging problem. Educating parents regarding autism helps in promoting wellbeing of autistic children.
15. Signature of principal
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