RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCE,
BANGALORE, KARNATAKA
PROFORMA FOR REGISTRATION OF SUBJECT FOR DISSERTATION
1. / NAME OF THE CANDIDATE & ADDRESS /Mrs. Lovely Sahadevan
The Capitol College of Nursing,
No.1, 9th cross, RBI Layout,
J.P. Nagar, 7th Phase,
Bangalore-560078.2. / NAME OF THE INSTITUTION / The Capitol College of Nursing, Bangalore – 560079
3. / COURSE OF STUDY AND SUBJECT / 1st Year M.Sc. Nursing
(PSYCHIATRIC NURSING)
4. / DATE OF ADMISSION OF COURSE / 03.06.2012.
5. / TITLE OF THE STUDY / “A study to assess the knowledge of behavioral therapy for autism among parents of autistic children in a selected special school in Bangalore with a view to develop information booklet.”
6. BRIEF RESUME OF THE INTENDED WORK
INTRODUCTION
“Today’s children are the tomorrow’s citizens”
Normal growth and development of a child can be divided into infancy, pre-school, middle childhood, and adolescence. Neural development is one of the earliest systems to begin and the last to be completed after birth. The first three years of life are very important for building the child’s brain.1
The developmental disorders that are seen in childhood are attention deficit hyperactivity disorder (ADHD), conduct disorder, pervasive developmental
disorder and autism. One of the childhood developmental disorders in children is autism.2
Autism is a neural developmental disorder characterized by impaired social interaction and communication and by restricted and repetitive behavior. The neurological disorder sets in with the first three years of life and impacts on information processing in the brain by altering how nerve cells and their synapses connect and organize.3
Autism disorder, also known as childhood autism is a condition characterized by marked and sustained impairment in social interaction, deviance in communication and restricted or stereotyped patterns of behavior and interest. Abnormalities in functioning in each of these areas must be present by the age of 3 years.4
Autism is a severe developmental disorder that begins at birth or within the first two-and-a-half years of life. Most autistic children are perfectly normal in appearance, but spend their time engaged in puzzling and disturbing behaviors which are markedly different from those of typical children. Autism is a pervasive developmental disorder defined by the presence of abnormal and/or impaired development that manifest before the age of 3 years, and by the characteristic type of abnormal functioning in all three areas of social interaction, communication, and restricted, repetitive behaviour. The degree may vary from mild to very severe and is hence it is known as Autism Spectrum Disorder. At the lower end it is known as Classic Autism and at the upper end it is called Asperger Syndrome. Parenting a child with autism is uniquely challenging and can be very demanding. Parents are the first people to recognize a developmental problem, and they must pursue their concern until they receive a satisfactory diagnosis and find or develop appropriate services for their child. Once they find a suitable treatment program, parents typically are active partners in their child’s education to ensure that skills learned in the educational program transfer to the home setting and to teach their child the many behaviors that are best mastered in the home and community.5
6.1 NEED FOR STUDY
Autism is a complex developmental disorder of the brain functions accompanied by intellectual and behavior deficit that very widely in type and severity. It is manifested during early childhood primarily 18-36 month of age. It occurs in 2 in 500 children and is about four times more common in males than in females and is not related to socioeconomic status, race or parenting style. In epidemiological studies the prevalence rate ranges from 4-5 per 10,000 children.6
Autism is the fastest-growing serious developmental disability in the world. Autism affects as many as 1 in 150 children and 1 in 94 boys. More children will be diagnosed with Autism this year than with diabetes, cancer and AIDS combined. Boys are four times more likely than girls to have Autism. There is no medical detection or cure for Autism, but early diagnosis and intervention improve outcomes. Autism does not discriminate by geography, class, or ethnicity.7
World Health Organization (WHO) put the global prevalence of autism 1 in 500 in 2012. The prevalence rate of autism worldwide in 2009 was about 1–2 per 1,000 people and about 6 per 1,000 for autism spectrum disorder (ASD). In USA, the prevalence of autism is 1 in 88 children making it the third most prevalent developmental disorder in the world. Autism is 3 to 4 times more common among boys than girls. It is estimated that 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States.8
According to estimates 2 million people are living with autism in India. India is a home to almost 19% of the world’s children. The prevalence of autism in India is 3-4/1000 live births now. More than one third of the country’s population, around 480 million, is below the age of 25 years (54% of the population). According to an assumption, 40% of these children are in need of care and protection, which indicates the extent of the problem. Incidence of autism in India is 5-15 autism cases in about 10,000 population. 1 in 500 Indian infants suffers from autism. 20,000 new cases are reported every year. The risk of autism is associated with several prenatal factors including advanced parental age and diabetes in mothers during pregnancy. 9
The incidence of autism in Karnataka has increased from 1 in 10,000 ten years ago to 1 in 150 today, an increase of over 6000%. Karnataka has 2.65 lakh autistic children and adults; it receives 250 to 300 autistic children annually and offers in-patient services to 90-120 children with autism every year.10
A study was conducted on child care problem and employment among families of preschool children with autism. In this, parents of 16,282 preschool children were surveyed. There were 82 children with autism in the sample, and 1,955 children at high risk on the basis of parent’s evaluation of developmental status. About 97% of preschool children diagnosed with autism were cared for in community settings. Thirty-nine percent of the parents of children with autism reported that child care problem had greatly affected their employment decisions, compared with other parents. The study concludes that autism is associated with higher use of child care services and higher probability that child care problems will greatly affect employment. These findings warrant the evaluation of the community resources available to families with children with autism.11
A study was conducted on caregivers-early intervention programme for autism. The early bird programme, a psycho-educational early intervention programme for care givers of children with autism was used. It aims to provide caregivers with skills to increase their child’s communication and manage challenging behaviors using behavioural techniques. Two interlinked studies examined access to the early bird programme and barriers which may affect uptake. Study 1 investigated who accessed the early bird program, and what factors influenced this choice. Study 2 was a qualitative investigation which focused on barrier to uptake for ethnic minority groups. Findings indicated that approximately 85% of families eligible for the programme do not participate. Ethnicity and length of wait time were significant factors in non-participation. The study concludes that a model of factors which may influence uptake of interventions targeting the families of children with autism can be managed best by preschool teachers. 12
After reviewing above facts, the researcher focuses on assessing the knowledge and opinion of parents towards behavioral therapy for autistic children. Many research studies also revealed the importance of knowledge regarding behavioral therapy for autism among parents. Hence the researcher is interested to assess the knowledge of parents about behavioral therapy for autism and to provide information through information booklet.
6.2 REVIEW OF LITERATURE
A review of related literature is an essential component of any research study or research project. Literature review through light on the studies and their findings reported about the problem under study. It gives understanding and inspires insight into the problem. The review of literature in a research report is a summary of current knowledge about a particular practice problem and included what is known and not known about the problem.13
The literature for the present study is organized and presented under the following headings:
1. The literature related to knowledge on autism.
2. The literature related to the educational intervention for behavioral therapy for autism.
1. Literature related to knowledge of parents on autism.
A study was conducted to identify the mothers’ recollections of early features of autism Spectrum Disorders in a community setting in 2009. From a population of children diagnosed with autism 72 parents were interviewed at home about their recollections of early difficulties which were analyzed thematically. A semi-structured interview schedule was formulated for this study with open ended questions relating to the signs that had alerted them to a problem. Information about the child and family were collected after the interview and the administration of Vineland Adaptive Behaviour Scales for identifying the current functioning of the child. The results showed that two-thirds of parents reported the child’s problems were apparent by 18 months with speech and communication difficulties, along with behaviour problems, being the most commonly reported. The study concludes that the parents were knowledgeable about their child’s condition only during 18 months.14
A study was investigated on enhancing generalized teaching strategy use in daily routines by parents of children with autism in the home setting. Five preschool children with autism participated in intervention with a parent within daily routines in the family’s home. Parents learned to include 2 teaching strategies in target routines to address their child’s communication objectives. Parent-child interactions in routines were videotaped for data coding and analysis. A multiple baseline design across teaching strategies was used to assess experimental effects. All parents demonstrated proficient use of teaching strategies and generalized their use across routines. The results showed that all parents perceived the intervention to be beneficial. The study concludes that parent-implemented interventions in natural environments with young children with autism spectrum disorder had positive effects on child communication outcomes.15
A study was conducted on the effect of a parent implemented imitation intervention on spontaneous imitation skills in young children with autism in the clinical setting in USA in 2006. This study assessed the effectiveness of parent-implemented reciprocal imitation training (RIT) using a multiple-baseline design across three young children with autism and their mothers by using a convenient sampling technique. After an initial baseline, mothers were taught to implement reciprocal imitation training (RIT) techniques with their child twice a week for 10 weeks in a clinic setting. Two mothers were taught to use reciprocal imitation training (RIT) to teach object imitation. The third mother was taught to use reciprocal imitation training (RIT) to target both object and gesture imitation in a multiple- baseline design across behaviours. Generalization was assessed in the families’ homes at the end of treatment and a 1-month follow-up. The results indicated that parents learned to use the intervention strategies and their children exhibited increases in spontaneous imitation. The study concludes that reciprocal imitation training (RIT) is effective for teaching imitation skills by the parents to young children with autism in a naturalistic setting.16
A descriptive study was conducted on Parental beliefs about autism in the hospital setting in New York. This study investigated parental beliefs about the etiology, diagnosis, and treatment of autism spectrum disorders. Sixty-two families of affected children completed a questionnaire asking when the parent first noticed developmental or behavioural problems, when they were told the diagnosis, how confident they were about the ability of their child’s physician to recognize autism, whether they believed anything specific might have caused their child’s autism, and what medications and complementary or alternative therapies they had tried. The results suggested that two- thirds of parents suspected a specific cause, and three-quarters questioned their physician’s ability. The study concludes that parents who perceived a greater delay in diagnosis or who had tried more different therapies both tended to have less confidence in their physician.17
2. The literature related to the educational intervention for behavioral therapy for autism.
A survey was conducted on views of parents and professionals about quality teaching in intensive behavioural intervention (IBI). The Parent Version of the survey was sent to 29 parents and professional version of the survey was sent to 67 known professional colleagues involved in Intensive Behavioural Intervention and or other services for children with autism. Parents rated the importance of two IBI characteristics and professionals indicated whether these characteristics should be measured objectively or subjectively. The results indicated that parental ratings supported the importance of virtually all the suggested characteristics while the professional results emphasized the importance of objective measurement. The most frequently selected indicators of high quality teaching across groups were: creating generalization opportunities, administering reinforces of the appropriate type, and using effective/appropriate behaviour management strategies. The study concludes that parents rated all characteristics as important, and every characteristic was selected by at least 9% of respondents as one of the most important top three characteristics of high quality IBI.18
A study was conducted to test a modular cognitive behavioral therapy (CBT) program for children with this profile. A standard cognitive behavioural therapy (CBT) program was augmented with multiple treatment components designed to accommodate or remediate the social and adaptive skill deficits of children with autism spectrum disorder (ASD) that could pose barriers to anxiety reduction. Forty children (7-11 years old) were randomly assigned to 16 sessions of cognitive behavioural therapy (CBT) or a 3-month waitlist (36 completed treatment or waitlist). Therapists worked with individual families. The cognitive behavioural therapy (CBT) model emphasized behavioral experimentation, parent-training, and school consultation. Independent evaluators blind to treatment condition conducted structured diagnostic interviews and parents and children completed anxiety symptom checklists at baseline and post treatment/post waitlist. Result of the study showed that 78.5% of the cognitive behavioural therapy (CBT) group met Clinical Global Impressions-Improvement scale criteria for positive treatment response at post treatment, as compared to only 8.7% of the waitlist group. Cognitive behavioural therapy (CBT) also outperformed the waitlist on diagnostic outcomes and parent reports of child anxiety, but not children's self-reports. Treatment gains were maintained at 3-month follow-up. The study concludes that cognitive behavioural therapy (CBT) manual employed in this study is one of the first adaptations of an evidence-based treatment for children with autism spectrum disorders.19