Nepalese Researches

Researches on Autism in Nepal

SN

NAME

YEAR

NAME OF INSTITUTION

RESEARCH TOPIC

1 Diwas Sharma Gartoulla 2010 Public health Research and Integrated Development Organization Nepal Study on Estimated Prevalence of Autism in Kathmandu District
2 Rachana Ghimire 2012 Nurshing Campus, TUTH Lived Experiences of Mother Having Children with Autism in Kathmandu
3 Dr. Videsha Shrestha 2013 Mahidol University, Bangkok

Nutritional Status Among Nepalese Disabled Children (6-12)years in Kathmandu Valley

4 Samrit Gurung 2013 Nobel College, Pokhara University A Study on Factors Associated with Autism
5 Barsha Bhandari 2015 Nepalese Army Institute of Health Sciences College of Nursing, Tribhuvan University

Knowledge and Attitude of Parents towards Children with Autism towards Children with Autism in Kathmandu Valley

6

Nisha Thapa

2015

Padmakanya Multiple Campus

Coping Strategies of Parents of Child with Autism

7

Srijana Regmi

Ongoing

National Academy for Medical Science

Knowledge Regarding Autism Among the Family members of  Children with Autism

8

Muna Lama

2015

Padmakanya Multiple Campus

Teacher’s Perspective on the Inclusion of Children with Autism in Mainstream Schools

9

Sharmila Maharjan

Ongoing

Padmakanya Multiple Campus

A Study on Autism and its Impact on Families in Kathmandu Metropolitan City

10

Shrijana Pandey

2015

Nurshing Campus, TUTH

Perceived Burden in Caregivers of Children Autism Spectrum Disorder

11

Deena Giri Ongoing Manmohan Memorial Institute of Health Sciences Prevalence of Depression among Mothers of Children with Autism Spectrum Disorder (ASD)

12

Dr. Nisha Ghimire Ongoing Nepal Medical College Case and Control Study of Dermatoglyphic Pattern of Sub-normal Intelligent Children”
13 Ms. Bibhuti Kiran Ghimire 2015 National College, Kathmandu University Role of Autism Care Nepal Society (ACNS) in Facilitating Education and Social Security to Children with Autism

GHIMIRE, B.K (2015) ROLE OF AUTISM CARE NEPAL SOCIETY (ACNS) IN FACILITATING EDUCATION AND SOCIAL SECURITY TO CHILDREN WITH AUTISM (CWA)

Abstract

Disability is characterized by any deformities or deviation from a normal pattern of growth in the physical or internal structure in an individual acting as an obstruction in conducting their daily living activities smoothly. Autism is such a state of disability where a child by birth shows problem in three core areas: communication, social skills and repetitive behaviors (echolalia). It is usually considered as an invisible disability as people cannot tell the difference between a child with autism and the one without it. Slowly and steadily people are getting insight about autism and have identified education as a treatment for it. Moreover they are getting aware that even PWAs have the right to live their life with dignity and self esteem.

Thus, this project work tries to ascertain the various works done by Autism Care Nepal Society, the only active organization working for autism only, in the sector of education and Social security. The data used in the study is qualitative and descriptive in nature. It is acquired with the help of case studies, interviews with key informants and observation.

ACNS was established in April 2nd 2008 in the auspicious occasion of World Autism Awareness Day and is run by the passionate parents of the PWAs. With the help of government, national and international support, the organization conducts various activities like diagnosis, counseling, assessments and capacity building trainings along with imparting education to the children with autism through Aarambha Pre-primary School. The student in Aarambha are engaged in a series of activities designed to build up their daily living skills, communication needs, cognitive skills, group interactions and social skills through the involvement of various techniques and different therapy sessions.

Apart from this, the organization has been conducting meetings and discussions with the government officials trying to sensitize the issue of autism and bring it to a spotlight. However, the problem has not been solved yet as people still remain ignorant about the topic and often confuse it with a mental disorder associating it with mental illness or intellectual disability.

Keywords: Autism, Invisible disability, Education and Social Security to Autism, Autism Care Nepal Society (ACNS)


REGMI, S (2015) KNOWLEDGE REGARDING AUTISM AMONG THE FAMILY MEMBERS OF CHILDREN WITH AUTISM AT AUTISM CARE CENTER IN KATHMANDU METROPOLITAN CITY

Abstract

This descriptive cross sectional study was carried out in AutismCare Nepal Society. The objective of the study was to find out the knowledge regarding autism among the family members of children with Autism. A total 40 sample was selected by using non-probability purposive sampling technique. Self administered structured and semi structured questionnaire was used to collect data. The data was analysed by using descriptive statistics.

The study findings revealed that all the respondents had known about Autism as a Neuro-developmental disorder. Similarly majority of the respondent’s child 80% were male and the child were diagnosed as an autism at age of more than 3 in 62.5%. The respondent accounting 90% told that they don’t know the exact cause of the Autism. The initial symptoms seen in the respondent’s child was language impairment, hearing impairment and lack of eye contact. Almost the entire 97.5% respondent had received training for the care of the child and improvement has been seen in the child’s behavior. All the respondents received training are satisfied from the training. The respondents feel problem in socialization of the child due to the childs hyperactive behavior.


PANDEY, S. (2015) PERCEIVED BURDEN IN CAREGIVERS OF CHILDREN WITH AUTISM SPECTRUM DISORDER IN KATHMANDU VALLEY

Abstract

Parenting a child with Autism Spectrum Disorder (ASD) causes more stress than parenting a child with other disabilities and creates a feeling of burden in them. This study was focused on obtaining a comprehensive picture of burden among caregivers of children with ASD. In this study, caregivers were found to have an average burden score of 41.49 plus/minus 12.25. Nearly 33% of caregivers were anxious while 24.6% were depressed. Level of education of caregivers was found to be significantly associated with overall burden and burden in social and family life, finances and control of life. The number of siblings of child with ASD was found to be significantly associated with burden in relationship. Anxiety and depression was found to affect the overall life of the caregivers except for their financial status. Qualitative analysis revealed five themes which were similar to the domins of Zarit Burden Interview. The domains were: burden in relationship, emotional well-being, finances, social and family life and loss of control over one’s life. In mixed method analysis, the quantitative findings were found to converge with almost all of the qualitative findings except in the status of caregiver’s depression. The divergence in status of depression might have occured as indepth qualitative exploration could reveal the inner feelings of caregivers.

This study thus concludes that the burden among caregivers of children with ASD is largely due to psychological distress and mixed method study is more illustrative in understanding subtle feelings like burden or psychological distress. It is recommended that psychological health of the caregivers should be evaluated with greater concern.


THAPA, N. (2015) PARENTAL COPING MECHANISM OF CHILDREN WITH AUTISM: A CASE OF NEPAL

Abstract

The present research tries to explore the stresses of parents of children with autism, to find out the coping strategy moslty used by parents of children with autism, compare between the strategy used by father and mother, to determine the health seeking behaviour, acceptance of autism in Nepales society and to describe problems felt by teachers while working with children with autism.

The data was collected using mixed method that is combination of qualitative and quantative method in AutismCare Nepal Society and SSDRC. In quantitative method, to collect primary data, structured questionnaire and structured interview was carried out. In order to collect qualitative data, unstructured interview, information discussion and observation was done. Interview was carried out with parents of CWA. Informal discussion was done with teachers and parent of CWA. Autism was suspected early at about 3months of child age and diagnosed late upto 12years of age. The mean age of autism diagnosis is 2.71 years. Parents felt stressed when heard about autism in their child. Most parents showed psychological problem (40.98%) and then cried and shouted (31.14%) when heard that their child has autism. Around half (24.65%) of the children had no speech and 16.43% had no eye contact with others. Most of the parents felt stress (71.42%) because of thinking uncertain future of child. All fo the parents of CWA move through stressful situation. The first thing which parents showed when first heard about having autism in their child is crying and shouting. The main coping mechanism followed by parents of CWA is family relationship mechanism. Fathers moslty follow seek other support mechanism while mother follow personal involvement with CWA mechanism. Parents often and equally visit both traditional healers and pediatrician. Autism acceptance is not in practice in Nepal as most of parent’s aren’t aware about autism condition and cannot accept autism as it is. According to teachers, there are no adequate and trained teachers to teach CWA properly in Nepal. In-service training for teachers and parent and child training is essential for proper care of CWA.


Lama, M. (2015) TEACHER’S PERSPECTIVE ON THE INCLUSION OF CHILDREN WITH AUTISM IN MAINSTREAM SCHOOLS

Abstract

Autism is a neurodevelopmental disorder characterized by impaired social interaction, verbal and non-verbal communication, and by restricted and repetitive behavior. The prevalence of autism is about 1-2 per 1,000 people worldwide whereas in context of Nepal, 250000 to 300000 individuals have been estimated by AutismCare Nepal Society, 2015. It occurs about four times more often in boys than in girls. The severity of autism ranges from low to high functioning based on one’s intellectual ability or how much support the individual requires in daily life, however, DSM-V puts all types of autism under same heading Autism Spectrum Disorder (ASD). The main objective of the mini project was to study the teacher’s perspectives on the inclusion of children with autism in mainstream schools. Also it, tended to explore common barriers faced by teachers and educational institution while integrating children with autism. The study was conducted in the teachers teaching in mainstream, inclusive or remedial school and had experience to teaching at least a child with autism. The study was moreover like a qualitative and cross sectionaly study which was carried out in mainstream, inclusive and remedial school in Kathmandu Valley. For the successful inclusion of the children with autism in mainstream schools, teacher’s training was most important along with collaboration of family and school administration. Use of PECS, ABA, Behavioral Therapy, TEACCH were essential for the teachers in order to manage challenging behaviors shown by children with autism.


BHANDARI, B. (2015) KNOWLEDGE AND ATTITUDE OF PARENTS TOWARDS CHILDREN WITH AUTISM IN KATHMANDU VALLEY

Abstract

As more people know about autism, the number of children with autism will rise because parents, until now tend to treat autism the same way as they treat other mental problems. Parents of children with autism are bound to face new challenge in each step of life.

A descriptive cross – sectional research design was used to conduct research. Non probability purposive sampling technique was used to select 50 samples (either father or mother) of children with autism. For the collection of data, semi – structured questionnaire was used. Researcher developed structured interview schedule and collected data in AutismCare Nepal Society (ACNS) and through Home visit. The collected data were analyzed through SPSS Software Version 20.

The demographic findings of the study revealed that (44%) of the respondent were aged between 30-33 years of age. Maximum respondent were female and there was minimum participation of male. The research concluded that majority of the respondents have inadequate knowledge regarding child with autism although all the respondents showed positive attitude towards children with autism. More emphasis should be given for information education communication strategies. In addition to this public awareness about autism can be given through formal and informal program and through mass media.


Gurung, S. (2013) STUDY ON FACTORS ASSOCIATED WITH AUTISM

Abstract

Autism is a pervasive mental disorder that presents as a disorder of profound social disconnection in early brain development. This disease is seen in the early life of the baby and usually occurs within 3years of birth. It is present all over the world and the prevalence of Autism in the World itself is 1 out of every 50 children. The objective of the study is to assess the factors associated with Autism.The research was conducted at autism care Nepal in Kathmandu valley. Simple Random sampling technique was used by lottery method. Semi structured questionnaire was used to assess the factor associate with autism. Sample size was case-30, control-60, 1:2 ratio. There were several factors that has been linked with Autism such as the prenatal, postnatal, neonatal and such other factors and the main point of focus is genetics. In this study the prenatal, postnatal, parental drug history and hereditary factors were studied. The study was case control study where the sampling was done with the prevalence of 1 out of every 50 children with the CI of 95% and Degree of error at 5%. Set of questionnaire administered through an interview was used to get the information. SPSS 17 was used for the data entry and analysis and Adjusted Odds Ratio was used to get the associated between the factors and Autism.Overall findings reveals that in the prenatal factors like the type of delivery, use of drugs during pregnancy, complications during pregnancy and stress during pregnancy had an association with Autism. In the Postnatal Factors like Weight at the time of birth, head injury during the childhood, severe accident during the childhood and physical illness after being vaccinated which had an association with Autism and odds ratio of 5.5, 0.833, 0.867 and 0.9 respectively. Similarly hereditary and parenatal drug history also associated with Autism.


SHRESTHA, V. (2013) NUTRITIONAL STATUS AMONG NEPALESE DISABLED CHILDREN (6-12) YEARS IN KATHMANDU VALLEY

Abstract

Nutrition is need of consumption in our daily life and hunger is a normal and natural phenomenon among living beings. Globally malnutrition is the most important risk factors for illness and death, widely spread all over the world. It causes more than half of the deaths in children in developing countries. Nepal faces one of the highest prevalence of malnutrition. The disabled children are ignored and marked as most vulnerable for malnutrition. The study was conducted with the objective to find nutritional status of disabled children in Kathmandu Valley, Nepal. It was cross-sectional study of the 131 disabled children living in Kathmandu Valley. Data was collected using anthropometric measurement and general interview and analyzed using descriptive and chi-square with the level of significance at 0.05.

The study was conducted among mentally and physical disabled children age (6-12) years at two organizations; Autism Care Nepal and Nepal Disabled Association in Kathmandu, Nepal. The result of this study reveals that prevalence of malnutrition was seen higher in physically disabled children who were 62.5% as compared to mentally disabled, who were 49.3%. The study also revealed that females were more malnourished than males. As our culture, Girls are thought to not need as much strength as boys who affected the taking of the amount of meal as well.

A significant relation was seen between type of disability and food finishing habit, vegetable consumption and junk food consumption. The food eating habits and selection of the food seems to be problematic among mentally challenged children which may be risk in future if not prevented.


GHIMIRE, R. (APRIL, 2012) LIVED EXPERIENCES OF MOTHERS HAVING CHILDREN WITH AUTISM IN KATHMANDU

Abstract

The words “Autistic” and “autism” are developed from the Greek word “autos” meaning “self’’. Leo kanner used the term autistic in 1943. Autism is neuro developmental disorder, starts at first three years of life and more common in boys than in girls. It is long term condition so needs life-long support and guide. Caring and managing children with autism is a challenging task so mothers need support and help.

The study was conducted with the objective of exploring the lived experiences of mothers who were taking care of children with autism. This qualitative study was conducted in Autism Care Nepal, Gairidhara, Kathmandu by using phenomenal method. 10 mothers having children with autism were selected as sample. An open ended interview guideline, audio tape and field note was used for collecting the information. Verbal and written informed consent was taken from each respondent.

The immense information was reduced to smaller statements to get the categorized and organized into 10 clusters of themes: behavior of the children, mode of treatment, reaction to diagnosis, experiences of therapeutic process, management of activities of daily living, cost management, social life, burden, satisfaction, experiences regarding schooling of the children and coping mechanisms.

The study reveals that all of the respondents were mother of child with autism and age ranged from 28-40 years. Regarding the occupation of the respondents, half of them were service holders, four of them were housewife and one was a social workers. All of the members realized that there was a difficult to maintain active social relation as before. All of the respondents had reported that uncontrollable behaviors of their children caused emotional breakdown. The most painful experiences of mothers 8 out of 10 were the schooling of the children. Respondents used to relieve their worries by sharing experiences with other mothers with similar problems. This study recommend that Public awareness program throughout country could be conducted. There is a need for research to examine the coping strategies, well being and caregivers satisfaction/burden experienced by caregivers to individuals with ASD.


Sharma, D. G.(2010) STUDY ON ESTIMATED PREVALENCE OF AUTISM

Abstract

The study sought to estimate the prevalence of autistic cases in Katmandu district. The specific objectives were to determine the level of autism prevalence and to find out the distribution pattern of autism by sex, age, ethnicity, socio-economic status.This study was done in Katmandu district on December 2009 to Mid February 2010. Participants were selected through snow ball sampling. Prevalence Data was collected with the help of Pediatrician, Occupational therapist, Psychiatrist, Speech therapist; Disability associated organizations based on their link. Both qualitative and quantitative tools were adopted to assess prevalence since the study was of mixed type. FGD Guideline, In-depth interview guideline and semi-structured questionnaire were also used to collect data from the respondents accordingly.

One hundred and seven cases of autism were identified during the study in two and a half months period. Among them 77 percent were male and 50 percent were of the age group 6 years to 10 years. Brahmin and chettri were affected more accounting 61 percent. Most of the cases were from the family with sound socio-economic status. Seventy four percent of cases were diagnosed before 3 years of age.

There is no scientific and research based evidence to conclude that the prevalence of autism has increased in past years. But from the experience of key informants who are working on their field for years, we can say that the prevalence of autism has increased in Katmandu valley and can be attributed to other factors.