INTRODUCTION:

American Psychiatric Association stated that autism spectrum disorder is a developmental disorder characterized by persistent deficits in social communication, social interaction and Hyman SL, levy se, 2020¹ Other signs in developmental challenge are: An unusual insistence on routine preference for being alone or aloofness, resistance to being held or touched.

Communicate repeating words or phrases Laughing, crying or showing distress for no apparent reason. Autism Check list the sun rises Program for Autism.

Autism is diagnosed fourfold more often in males than females. ASDs observe in childhood and have a tendency to persist into adolescence and adulthood. In most cases the conditions are apparent during the primary 5 years of life. Children about 1:59 ratio was identified with autism spectrum disorder (ASD) according CDC’s Autism and Developmental Disabilities Monitoring. ASD is reported to occur altogether racial, ethnic, and socioeconomic groups. On April 26, 2018, the Centres for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States about 1 percent of the world population has autism spectrum disorder. (CDC, 2014), Japan was estimated to possess the very best rate of autism alongside approximately 161 children per 10, 0000 with the disorder. Sunil Kumar Raina, Vishav Chander,² Today, the CDC estimates 1 in 59 children 1 in 37 boys and 1 in 151 girls as having autism spectrum disorder (ASD. Statistics showed that in India the number of children diagnosed with autism with the ratio being about 1:100. Around 10 percent of school-going children have been diagnosed with mild to severe learning challenges,” Autism is estimated 1 in every 70 children in the state of Missouri (1 in 43 boys and 1 in 200 girls). It is estimated that worldwide 1in 160 children have an ASD. Prevalence Rate: Approx. 1 in 500 or 0.20% or more than 2,160,000 people in India Anil Chauhan, Jitendra K, 2019.³ The complex nature of these disorders, coupled with a lack of biologic markers for diagnosis and changes in clinical definitions over time, creates challenges in monitoring the prevalence of ASDs. Sarika Yadav, 2016⁴ The etiologic is very complex and described, and includes genetic, epigenetic, or environmental factors in isolation or associated. but it is mainly identified abnormalities in brain structure or function. The most common abnormalities found in total brain volume, cerebellum, amygdala, hippocampal, basal ganglia, insula, grey and white matter. Limited MRI research has been done on less than 2 years ASD children. Future research should include autistic children less than 2 years along with functional MRI and diffusion tensor imaging. P. Yugander, M. Jagannath.2021⁵

Parenting behaviour and behaviour problems are two different measures which have effect on individual’s life. Aamir Gul, Nasrullah Bhat, et.al, 2019⁶ Primary caregivers are affected at risk of mental illness and reduced quality of life. Debbie Leigh Fewster, Pragashnie Govender, 2019⁷Although interventions for the child with autism spectrum dis quality of life (QoL) Parents of children with autism spectrum disorder (ASD) tend to experience greater psychological distress than parents of youngsters with other disabilities. Most of the parents were suffered to deal with their child's behaviour. Vicki Bitsika, Christopher Sharpley 2004⁸ Having a child with ASD the impact on various aspects of family lives is affected including housekeeping, finances, emotional and mental health of parents, marital life, physical health of family members, limiting to concentrate the needs of other children within the family, poor sibling relationships, relationships with extended family, friends and neighbours and in recreation and leisure activities. Rabea Begum and Firoz Ahmed Mamin. 2019⁹ A study shows that Children with autism face a spread of challenge which will significantly negatively impact on parent and family functioning. Also, it can create significant stress throughout all relations. Thus, social and communication deficits effect on total relations. .In research it's found that oldsters of youngsters with ASD have more divorce rate than parents who don't have a toddler with a developmental disability. Need Positive and supportive social support may beneficial for the reductions in stress for parents of children with autism spectrum disorder. World Health Organization (WHO) declared that quality of life (QoL) is defined as “the individual's perception of their position in life in the context of the culture and value systems in which they live. Health-related QoL is a broad concept that are directly or indirectly related to health. Health-related QoL refers to the impact of health status on the individual's ability to function and therefore the individual's perception of physical, mental, and social domains of life. Nowadays, it is focused not only eliminating a disease but also the improvement of the individual's QoL. For this reason, QoL has become important. Since ASD is a lifelong disease, the negative effects of the disease on the QoL of caregivers as well as patients are incontrovertible. Borte Gurbuz Ozgur, Hatice Aksu 2018¹⁰ The QoL of patients with ASD as well as their caregivers are negatively affected. parent a child with ASD requires significant investment of time, energy, and resources, including participating in interventions, has led researchers and clinicians to test the effectiveness of interventions that directly aim to scale back parenting stress and limit negative emotional, social, and health outcomes for folks.

MATERIALS AND METHODS:

Study design:

The present study is a prospective, nonrandomized design with pre-test and post-test assessment. The study was approved by the Institutional Ethics Committee of Saveetha Medical College and Hospital (No 0.001/02/2019/IEC/SMCH.) An information sheet was provided about the study in English and local language (Tamil) to the parents of the children, and signed consent for participation in the study was obtained. Confidentiality was maintained.

Participants:

The study was conducted at Kiddos Rehabilitation Center (Chennai, India) and Saveetha Medical College and Hospital (Chennai, India). A total of 60 ASD children from the two centers who met the inclusion criteria were selected and assigned to control and experimental groups equally (30 each). Children between 5 to 10 years of age, male and female with mild and moderate ASD were the inclusion criteria. Children diagnosed with attention deficit disorder, learning disability, severe ASD and cerebral palsy were excluded.

Methodology:

The experimental group received evidence-based intervention with PECS and PII for 6 months, whereas the control group received routine care. The children were assessed for SRR and SLC, quality of life of parents before and after the intervention. For the experimental group a 3-month post intervention along with quality of life of parents were also assessed. National Institute for Mentally Handicapped (NIMH) developed the Indian Scale for Assessment of Autism (ISAA) for diagnosing and measuring the severity of autism (Patra & Arun, 2011). The SRR and SLC were assessed using the ISAA questionnaire, consisting of 18 items and quality of life of parents were assessed with Modified Quality of Life in Autism Questionnaire (QoLA). The PECS consisted of picture cards and communication books. The children were trained to hand over a picture to the investigator in exchange for a desired item. The children recognized a picture from their communication book and delivered it to the investigator. The children were able to differentiate desired items and non-desired items. The children were trained to use specific phrases followed by the desired item for picture discrimination and sentence completion. As a part of PII the parent involvement was used to promote PECS from the cards and the books after the hospital and rehabilitation center sessions. The sessions consisted of 3 days per week followed by PII for 2 days at home for total 6 months. The general observation was that the children took 2 months to acquire the skill of exchange a picture for an item. 2 months was taken for discrimination of the cards. Another 2 months was taken for sentence building. In about 6 months the children were able to gain functional communication skills by PECS.

Statistical analysis:

Parametric and nonparametric statistical procedures were used for the analysis. The demographic profiles of control and experimental groups were analyzed by c2 test for homogeneity. The control and experimental groups pre-test and post-test 2 (between groups) were analyzed by Mann Whitney rank sum test. The control pre-test and post-test (within group) was analyzed by Wilcoxon signed rank test and the experimental pre-test, post-test 1 and post-test 2 (within group) was analyzed by Friedman RM ANOVA with Dunnett’s test. Additionally, two-way RM ANOVA was also used for the comparison of groups (control and experimental), the tests (pre-test and post-test 2), and the interactions with Bonferroni ‘t’ test. SigmaPlot 14.5 (Systat Software, San Jose, CA, USA) was used for the statistical analysis and graph plotting.

RESULTS:

Table1: Frequency and percentage distribution of demographic variables of ASD Children receiving Evidence Based Nursing Intervention. n = 60 (30+30)

Demographic Variables	Experimental Group		Control Group
Demographic Variables	No.	%	No.	%
Age
5 - 6 years	11	36.6	8	26.6
7 - 8 years	11	36.6	10	33.3
9 - 10 years	8	26.6	12	40
Gender
Male	21	70	20	66.6
Female	9	30	10	33.3
Type of family
Joint family	10	33.3	9	30
Nuclear family	20	66.6	21	70
Type of Marriage
Consanguineous Marriage	6	20	4	13.3
Non-Consanguineous Marriage	24	80	26	86.6
Mode of Delivery
Normal Delivery	27	90	24	80
Cesarean section	3	10	6	20
Birth Order of the Child
First	10	33.3	8	26.6
Second	15	50	16	53.3
Third	5	16.6	6	20

The table 1 shows that in the experimental group, maximum 21(70%) were Male children. In control group also maximum 20(66.6%) were Male children. Males presented with ASD in a higher proportion as compared to female children consistent with studies from elsewhere showing male predilection, and there is no evidence to date that explains this finding. One possible reason is that female children are more able to mask their behavioral difficulties than males. Furthermore, in developing countries, families may pay more attention to the development of male children compared with females or there could be lack of willingness by parents to report certain behavior exhibited by a female child. The prevalence is also affected by accessibility to a tertiary care center and source of case identification (mainly families). Increased awareness about ASD with better access to health-care services among urban population leads to early diagnosis and management of the disorder. The age distribution in control group for 5 - 6, 7 - 8, and 9 - 10 years, were 26.6, 33.3 and 40.0 % respectively. In the experimental group it was 36.6, 36.6 and 26.6% respectively (c2 1.321; P = 0.517). In the control group 66.6% were male and 33.3% were female, and in the experimental group 70.0% were male and 30.0% were female (c2 = 0; P = 1.0). In the control group 30.0% were joint family and 70.0% were nuclear family, and in the experimental group 33.3% were joint family and 66.6 % were nuclear family (c2 = 0; P = 1.0). In the control group 13.3% were consanguineous marriage and 86.6% were non-consanguineous marriage, and in the experimental group 20.0% were consanguineous marriage and 80.0% were non-consanguineous marriage (c2 = 0.120; P = 0.729). In the control group 80.0% were normal delivery and 20.0% were caesarean delivery, and in the experimental group 90.0% were normal delivery and 10.0 % were caesarean delivery (c2 = 0.523; P = 0.470). In the control group the first, second and third order of birth were 26.6, 53.3 and 20.0 % respectively. In experimental group it was 33.3, 50 and 16.6% respectively (c2 = 0.345; P = 0.841). The total data revealed that male, nuclear family and birth order above one was more in ASD (Table 1).

Figure I Part: A overall perception of their quality of life.

Quality of life of parents the Control group pre-test and post-test were compared by Wilcoxon Signed rank test, The Experimental group pertest post-test I and post-test 2 were compared by Fried man’s repeated measures. Anova with Dunnett’s test. comparison test with the pre-test. The significance with pre-test was denoted by the letter ‘a’. The respective pre-test and post-test 2 were compared Mann Whitney rank sum test. The significance was denoted by the letter ‘b’. A two-way repeated measures Anova was also presented for the groups. (control and Experimental) as one factor and tests (pre-test and post-test) as on the factor and interaction. Sigma plot B (statistical significance) was used for statistical analysis and graph plotting. A ‘p’ value of 0.05 and less was taken as statistically significant.

Figure II: Part B: assess parents’ perception of how problematic their child’s autism-specific difficulties

The median of Quality of Life (QoL) of control group pre-test and post-test are 42.03, 42.83 respectively. It was found to be statistically significant (P<0.001). The median of Experimental group pre-test, post-test 1 and post-test 2 were 54.5 and 66.3 respectively. It was found to be statistically significant (p<0.001). Compared to the pre-test, post-test 1 and post-test 2 were significant. The control pre-test and experimental pre-test was not statistically significant whereas, the control post-test 2 and experimental post-test 2 were statistically significant. The mean of Quality of Life of parents control pre-test, post-test 2, experimental pre-test and pot-test 2 were 42.4, 42.8, 53.9, and 66.3 respectively. The tow-way repeated measures Anova revealed no statistically significant among the groups p=0.442) but significant among the test (p<0.001). The group between test Quality of life also showed significant difference (p<0.001) at experimental post-test 2 showed better improvement.

DISCUSSION:

Like all children, children with ASD bring both negative and positive experiences for parents and families—from increased resource needs, to higher levels of parenting-related stress, to positive personal growth for family members. Parenting a child with autism spectrum disorder (ASD) is challenging and can result in elevated levels of parenting stress. Shepherd D, Landon J,2018¹¹ It is increasingly recognized that, although children with ASD are the primary targets of early ASD intervention, ASD intervention also impacts parents. Parents experience the impact of intervention directly, through interaction with providers within the health care and educational systems. Children gains in intellectual, educational, and adaptive behavioural and social skills, and there was a positive relationship between the time intensity of the early teaching interventions and child outcome gains. Osborne LA, McHugh L,2008¹² Parents also experience indirect impacts of ASD intervention due to accelerated developmental progress of children who are benefitting from services and when children make slower progress than expected or have challenging behaviors. The PES increases in social-communicative behaviors and decreases in problem behaviors among ASD children. Marjorie H Charlop-Christy, 2013¹³. Interventions that directly target parent well-being also have the potential to improve outcomes when delivered alongside child-focused interventions. Parent training (PT) is known to improve a mother’s mental health (Iida N, Wada Y, Yamashita T)¹⁴Taken together, there is strong evidence that a child’s treatment can have positive impacts on parents. Continued research and clinical innovation are needed to ensure that evidenced based Nursing Intervention and parent-implemented interventions are optimally designed to improve family adaptive functioning and lead to better outcomes for children with ASD and their families. Karen Kuhlthau, Nalin Payak chat¹⁵. The influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well. on the impact of ASD intervention on parents of young children with ASD is a promising avenue for improving the lives of children with ASD and their families. parent-implemented reinforcement for decreasing off-task behaviour of students with ASD at school. Samantha E Goldman,¹⁶ Recent research suggests that using naturalistic teaching paradigms leads to therapeutic gains in clinic settings for children with autism and related disorders. Koegel RL. Bimbela A. Schreibman L¹⁷Researchers commonly report that families of children with autism spectrum disorder (ASD) experience more parenting stress than families of typically developing (TD) children or those diagnosed with other disabilities [e.g., Down syndrome (DS), cerebral palsy, intellectual disability].

CONCLUSION:

Practitioners reported they were confident when implementing Picture Exchange Communication System and considered integrating Picture Exchange Communication System at school to be important. Batool Alsayedhassan^, Jaehoon Lee¹⁸ Picture Exchange Communication System (PECS) for improving the functional communication skills of individuals with autism spectrum disorders (ASD). Kai-Chien Tien¹⁹ The present study shows that the picture exchange communication system and parent implemented intervention significantly can improve social skill and communication among autism spectrum disorder children and quality of life of their Parents. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well. Karen Kuhlthau. Nalin Payakachat²⁰

ACKNOWLEDGEMENT:

The authors would like to thank the health care team members of Kiddos Rehabilitation Center and Saveetha Medical College and Hospital for their support.

DECLARATION OF CONFLICTING INTEREST:

The authors declare that there is no conflict of interest.

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Received on 03.08.2021 Modified on 03.11.2021

Research J. Pharm. and Tech 2022; 15(10):4419-4424.

DOI: 10.52711/0974-360X.2022.00741