Search results for: autistic children

Authors: Emad M.Abdullat, Hasan A. Ader-Rahman, Rayyan Al Ali, Arwa.A.Hudaib

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This retrospective study aims to determine the epidemiological features of such deaths in one of the general teaching hospitals in Jordan with a focus on weaning practices and its relation to sucking as major factors underlying the mechanism of choking in infants and young children. The study utilized a retrospective design to review the records of forensic cases due to foreign body aspiration examined at the forensic department at the Jordan University Hospital. A total of 27 cases of choking in the pediatric age group were retrieved from the reports of the autopsy cases dissected. All cases of children who died due to chocking by foreign bodies were under 11 years old. Choking by food materials constituted (44.4%) of cases under 3 years of age while choking by non-food material were less prevalent under 3 years of age and comprising 18.5% of the cases. Health care personnel and parents need to be aware that introduction of solid food, unlike exclusive breast or formula-milk feeding, can have serious consequences if occurring in inappropriate timing or consistency during early childhood physical and functional development. Parents need to be educated regarding the appropriate timing and process of weaning.

Keywords: chocking, infants, weaning practices, young children

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Authors: Kaveh Azadeh, Saeid Fazelifar

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The main purpose of the present study was to examine the effect of 12 weeks (3 days/week) concurrent training followed by 4 weeks detraining on insulin resistance in obese boys without dietary intervention. Methods: 24 obese children boys (body mass index> 28, age= 11- 13year old) voluntarily participated in the study. Biochemical factors, body composition, and functional physical fitness were assessed in three stages [baseline, after 12 week’s combined endurance and resistance training and 4 week’s detraining in the experimental group (n=12); baseline and after 12 weeks in control group (n=12)]. Results: Indepented - Sample T test revealed that in experimental group after 12weeks trainings the insulin resistance, and body fat mass were significantly declined, whereas endurance and strength of abdominal muscles significantly increased compared to control group (p<0/05). One-way ANOVA for three different periods showed that insulin resistance, body fat mass, strength of abdominal muscles after 12week training was significantly improved in the experimental group compared with the baseline. Following 4weeks detraining insulin resistance again significantly increased (p<0/05). After detraining disturbances of physiological adaptation in obese children have more rapid course in comparison with those anthropological and functional indices. Conclusion: Results showed that participation in the regular concurrent trainings provides a decrease of insulin resistance in obese children. It may serve as a strategy in treatment of obesity and management on insulin resistance, as well as to increase endurance and strength muscles in obese children. Adaptations resulting from regular exercises following detraining are reversible.

Keywords: endurance and resistance trainings, detraining, insulin resistance, obese children

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Authors: Rachelle M. Johnson, Jenna E. Finch

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Motivation, persistence, and learning disability status are all associated with academic performance, but to the author's knowledge, little research has been done on how these variables interact with one another and how that interaction looks different within children with and without learning disabilities. The present study's goal was to examine the role motivation and persistence play in the academic success of children with learning disabilities and how these variables interact. Measurements were made using surveys and direct cognitive assessments on each child. Analyses were run on student's scores in motivation, persistence, and ability to learn compared to other fifth grade students. In this study, learning ability was intended as a proxy for learning disabilities (LDs). This study included a nationally representative sample of over 8,000 fifth-grade children from across the United States. Multiple interactions were found among these variables of motivation, persistence, and motivation as they relate to academic achievement. The major finding of the study was the significant role motivation played in academic achievement. This study shows the importance of measuring the within-group. One key finding was that motivation was associated with academic success and was moderated by the other variables. The interaction results were different for math and reading outcomes, suggesting that reading and math success are different and should be addressed differently. This study shows the importance of measuring the within-group differences in levels of motivation to better understand the academic success of children with and without learning disabilities. This study's findings call for further investigation into motivation and the possible need for motivational intervention for students, especially those with learning disabilities

Keywords: academic achievement, learning disabilities, motivation, persistence

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Authors: Samrawit Tamrat Gebretsadik

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Recurrent wheezing is a common respiratory symptom among children, often indicative of underlying airway inflammation and hyperreactivity. Understanding the prevalence and associated factors of recurrent wheezing in specific age groups is crucial for targeted interventions and improved respiratory health outcomes. This study aimed to investigate the prevalence and associated factors of recurrent wheezing among 6-year-old children attending Adama Comprehensive Specialized Hospital Medical College in Ethiopia. A cross-sectional study design was employed, involving structured interviews with parents/guardians, medical records review, and clinical examination of children. Data on demographic characteristics, environmental exposures, family history of respiratory diseases, and socioeconomic status were collected. Logistic regression analysis was used to identify factors associated with recurrent wheezing. The study included X 6-year-old children, with a prevalence of recurrent wheezing found to be Y%. Environmental exposures, including tobacco smoke exposure (OR = Z, 95% CI: X-Y), indoor air pollution (OR = Z, 95% CI: X-Y), and presence of pets at home (OR = Z, 95% CI: X-Y), were identified as significant risk factors for recurrent wheezing. Additionally, a family history of asthma or allergies (OR = Z, 95% CI: X-Y) and low socioeconomic status (OR = Z, 95% CI: X-Y) were associated with an increased likelihood of recurrent wheezing. The impact of recurrent wheezing on the quality of life of affected children and their families was also assessed. Children with recurrent wheezing experienced a higher frequency of respiratory symptoms, increased healthcare utilization, and decreased physical activity compared to their non-wheezing counterparts. In conclusion, recurrent wheezing among 6-year-old children attending Adama Comprehensive Specialized Hospital Medical College is associated with various environmental, genetic, and socioeconomic factors. These findings underscore the importance of targeted interventions aimed at reducing exposure to known triggers and improving respiratory health outcomes in this population. Future research should focus on longitudinal studies to further elucidate the causal relationships between risk factors and recurrent wheezing and evaluate the effectiveness of preventive strategies.

Keywords: wheezing, inflammation, respiratory, crucial

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Authors: Bassma A. Abdel Haleem, Ehab K. Emam, George E. Yacoub, Ashraf M. Salem

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Background: Obesity is an increasingly common problem in childhood. Childhood obesity is considered the main risk factor for the development of metabolic syndrome (MetS) (diabetes type 2, dyslipidemia, and hypertension). Recent studies estimated that among children with obesity 30-60% will develop MetS. Visceral fat thickness is a valuable predictor of the development of MetS. Computed tomography and dual-energy X-ray absorptiometry are the main techniques to assess visceral fat. However, they carry the risk of radiation exposure and are expensive procedures. Consequently, they are seldom used in the assessment of visceral fat in children. Some studies explored the potential of ultrasound as a substitute to assess visceral fat in the elderly and found promising results. Given the vulnerability of children to radiation exposure, we sought to evaluate ultrasound as a safer and more cost-efficient alternative for measuring visceral fat in obese children. Additionally, we assessed the correlation between visceral fat and obesity indicators such as insulin resistance. Methods: A cross-sectional study was conducted on 46 children with obesity (aged 6–16 years). Their visceral fat was evaluated by ultrasound. Subcutaneous fat thickness (SFT), i.e., the measurement from the skin-fat interface to the linea alba, and visceral fat thickness (VFT), i.e., the thickness from the linea alba to the aorta, were measured and correlated with anthropometric measures, fasting lipid profile, homeostatic model assessment for insulin resistance (HOMA-IR) and liver enzymes (ALT). Results: VFT assessed via ultrasound was found to strongly correlate with the BMI, HOMA-IR with AUC for VFT as a predictor of insulin resistance of 0.858 and cut off point of >2.98. VFT also correlates positively with serum triglycerides and serum ALT. VFT correlates negatively with HDL. Conclusions: Ultrasound, a safe and cost-efficient technique, could be a useful tool for measuring the abdominal fat thickness in children with obesity. Ultrasound-measured VFT could be an appropriate prognostic factor for insulin resistance, hypertriglyceridemia, and elevated liver enzymes in obese children.

Keywords: metabolic syndrome, pediatric obesity, sonography, visceral fat

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Authors: Aber Aboalgasm, Rupert Ward, Ruth Taylor, Jonathan Glazzard

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Teaching art by digital means is a big challenge for the majority of teachers of art and artistic design courses in primary education schools. These courses can clearly identify relationships between art, technology, and creativity in the classroom .The aim of this article is to present a modern way of teaching art, using digital tools in the art classroom in order to improve creative ability in pupils aged between 9 and 11 years; it also presents a conceptual model for creativity based on digital art. The model could be useful for pupils interested in learning drawing and using an e-drawing package, and for teachers who are interested in teaching their students modern digital art, and improving children’s creativity. This model is designed to show the strategy of teaching art through technology, in order for children to learn how to be creative. This will also help education providers to make suitable choices about which technological approaches they should choose to teach students and enhance their creative ability. It is also expected that use of this model will help to develop social interactive qualities that may improve intellectual ability.

Keywords: digital tools, motivation, creative activity, education

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Authors: Sung Hyun Kim

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Introduction: Sleep disturbance is common in children with developmental disorders (D.D.). Sleep disturbance has a variety of negative effects, such as behavior problems, medical problems, and even developmental problems in children with D.D. However, to our best knowledge, there has been no proper treatment for sleep disorders in children with D.D. Therefore, we conduct this study to know the positive effects of intensive rehabilitation therapy in children with D.D. on the degree of sleep disturbance. Method: We prospectively recruited 22 patients with a diagnosis of D.D. during the period of January 2022 through May 2022. The inclusion criteria were as follows: 1) a patient who would participate in the intensive rehabilitation therapy of our institution; 2) the age participant under 18 years at the time of assessment; 3) a child who has consented to participate in the study by signing the consent form by the legal guardian. We investigated the clinical characteristics of participants by the medical record, including sex, age, underlying diagnosis of D.D., and Gross Motor Function Measures (GMFM). Before starting the intensive rehabilitation therapy, we conducted a Sleep disturbance scale for children (SDSC). It contains 26 questions about children’s sleep, and those questions are grouped into six subscales, such as Disorders of initiating and maintaining sleep (DIMS), Sleep Breathing Disorders(SBD), Disorders of arousal(DOA), Sleep-Wake Transition Disorders(SWTD), Disorders of excessive somnolence(DOES) and Sleep Hyperhydrosis(SHY). We used the t-score, which was calculated by comparing the scores of normal children. Twenty two patients received 8 weeks of intensive rehabilitation, including daily physical and occupational therapy. After that, we did follow up with SDSC. The comparison between SDSC before and after intensive rehabilitation was calculated using the paired t-test, and P< 0.05 was considered statistically significant. Results: Demographic data and clinical characteristics of 22 patients are enrolled. Patients were 4.03 ± 2.91 years old, and of the total 22 patients, 14 (64%) were male, and 8 (36%) were female. Twelve patients(45%) were diagnosed with Cerebral palsy(C.P.), and the mean value of participants’ GMFM was 47.82 ± 20.60. Each mean value of SDSC’s subscales was also calculated. DIMS was 62.36 ± 13.72, SBD was 54.18 ± 8.39, DOA was 49.59 ± 7.01, SWTD was 58.95 ± 9.20, DOES was 53.09 ± 15.15, SHY was 52.14 ± 8.82, and the total was 59.86 ± 13.18. These values suggest that children with D.D. have sleep disorders. After 8 weeks of intensive rehabilitation treatment, the score of DIMS showed improvement(p=0.016), but not the other subscale and total score of SDSC. Conclusion: This result showed that intensive rehabilitation could be helpful to patients of D.D. with sleep disorders. Especially intensive rehabilitation therapy itself can be a meaningful treatment in inducing and maintaining sleep.

Keywords: sleep disorder, developmental delay, intensive rehabilitation therapy, cerebral palsy

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Authors: Elnaz Dabiri, Somayeh Hamidnezhad

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Background and Objective: This study aims at investigating the effect of whole word method on Mean Length of Utterance (MLU) of 3 to 6 years old children with cochlear implants having normal IQ. Materials and Methods: In this quasi-experimental and interventional study, 20 children with cochlear implants, aged between 3and 6 years, and normal IQ were selected from Tabriz cochlear implants center using convenience sampling. Afterward, they were randomly bifurcated. The first group was educated by whole-word reading method along with traditional methods and the second group by traditional methods. Both groups had three sessions of 45-minutes each, every week continuously for a period of 3 months. Pre-test and post-test language abilities of both groups were assessed using the TOLD test. Results: Both groups before training have the same age, IQ, and MLU, but after training the first group shows a considerable improvement in MLU in comparison with the second group. Conclusions: Reading training by the whole word method have more effect on MLU of children with cochlear implants in comparison of the traditional method.

Keywords: cochlear implants, reading training, traditional methods, language therapy, whole word method, Mean Length of Utterance (MLU)

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Authors: Sharlene Fernandes

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Literature has shed light on the challenges of mothers of children with ASD, one of which involves sacrificing their professional jobs to fulfill the demands of their caregiving roles. However, the voices of the mothers who pursue employment along with caregiving roles have been overlooked. This study aimed to address this issue by exploring the narratives of Employed Mothers of Children with Autism Spectrum Disorder using the Narrative approach to inquiry. Through the view of Feminist Standpoint Theory, this study attempted to understand the role of sociocultural and systemic factors in shaping the lives of mothers. By employing the theoretical lens of Ethics of Care, this study explored how mothers balance care with their employment responsibilities, which are expected to be balanced seamlessly. Through narrative interviews, the study addressed the mothers' narratives on navigating work and caregiving, delving into their interpretations regarding expectations of care. The study gained valuable insights into the nuanced dynamics of employment, caregiving, and gender roles among mothers of children with Autism in the Indian context, implicating the urgent need for organizational policies, enhanced support systems, better quality therapeutic services, and inclusive school developments.

Keywords: Autism Spectrum Disorder, Caregivers, Employed Mothers, India, Narratives

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Authors: Lydia Foucan, Laurent Larifla, Emmanuelle Durand, Christine Rambhojan, Veronique Dhennin, Jean-Marc Lacorte, Philippe Froguel, Amelie Bonnefond

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In the population of Guadeloupe Island (472,124 inhabitants and 80% of subjects of African descent), overweight and obesity were estimated at 23% and 9% respectively among children. High prevalence of diabetes has been reported (~10%) in the adult population. Nevertheless, no study has investigated the contribution of gene mutations to childhood obesity in this population. We aimed to investigate rare genetic mutations in genes involved in monogenic obesity or diabetes in obese Afro-Caribbean children from Guadeloupe Island using next-generation sequencing. The present investigation included unrelated obese children, from a previous study on overweight conducted in Guadeloupe Island in 2013. We sequenced coding regions of 59 genes involved in monogenic obesity or diabetes. A total of 25 obese schoolchildren (with Z-score of body mass index [BMI]: 2.0 to 2.8) were screened for rare mutations (non-synonymous, splice-site, or insertion/deletion) in 59 genes. Mean age of the study population was 12.4 ± 1.1 years. Seventeen children (68%) had insulin-resistance (HOMA-IR > 3.16). A family history of obesity (mother or father) was observed in eight children and three of the accompanying parent presented with type 2 diabetes. None of the children had gonadotrophic abnormality or mental retardation. We detected five rare heterozygous mutations, in four genes involved in monogenic obesity, in five different obese children: MC4R p.Ile301Thr and SIM1 p.Val326Thrfs*43 mutations which were pathogenic; SIM1 p.Ser343Pro and SH2B1 p.Pro90His mutations which were likely pathogenic; and NTRK2 p.Leu140Phe that was of uncertain significance. In parallel, we identified seven carriers of mutation in ABCC8 or KCNJ11 (involved in monogenic diabetes), which were of uncertain significance (KCNJ11 p.Val13Met, KCNJ11 p.Val151Met, ABCC8 p.Lys1521Asn and ABCC8 p.Ala625Val). Rare pathogenic or likely pathogenic mutations, linked to severe obesity were detected in more than 15% of this Afro-Caribbean population at high risk of obesity and type 2 diabetes.

Keywords: childhood obesity, MC4R, monogenic obesity, SIM1

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Authors: Sajee A. Gamage, Champa J. Wijesinghe, Patricia Burtner, Ananda R. Wickremasinghe

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Background: Teachers working in the context of special education have an enormous responsibility of enhancing performance skills of children in their classroom settings. Fine Motor Skills (FMS) are essential functional skills for children to gain independence in Activities of Daily Living. Children with Down Syndrome (DS) are predisposed to specific challenges due to deficits in FMS. This study is aimed to determine the teachers’ experience on improving FMS of children with DS in the context of special education of Southern Province, Sri Lanka. Methodology: A cross-sectional study was conducted among all consenting eligible teachers (n=147) working in the context of special education in government schools of Southern Province of Sri Lanka. A self-administered questionnaire was developed based on literature and expert opinion to assess teachers’ experience regarding deficits of FMS, limitations of classroom activity performance and barriers to improve FMS of children with DS. Results: Approximately 93% of the teachers were females with a mean age ( ± SD) of 43.1 ( ± 10.1) years. Thirty percent of the teachers had training in special educationand 83% had children with DS in their classrooms. Major deficits of FMS reported were deficits in grasping (n=116; 79%), in-hand manipulation (n=103; 70%) and bilateral hand use (n=99; 67.3%). Paperwork (n=70; 47.6%), painting (n=58; 39.5%), scissor work (n=50; 34.0%), pencil use for writing (n=45; 30.6%) and use of tools in the classroom (n=41; 27.9%) were identified as major classroom performance limitations of children with DS. Parental factors (n=67; 45.6%), disease specific characteristics (n=58; 39.5%) and classroom factors (n=36; 24.5%), were identified as major barriers to improve FMS in the classroom setting. Lack of resources and standard tools, social stigma and late school admission were also identified as barriers to FMS training. Eighty nine percent of the teachers informed that training fine motor activities in a special education classroom was more successful than work with normal classroom setting. Conclusion: Major areas of FMS deficits were grasping, in-hand manipulation and bilateral hand use; classroom performance limitations included paperwork, painting and scissor work of children with DS. Teachers recommended regular practice of fine motor activities according to individual need. Further research is required to design a culturally specific FMS assessment tool and intervention methods to improve FMS of children with DS in Sri Lanka.

Keywords: classroom activities, Down syndrome, experience, fine motor skills, special education, teachers

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Authors: Asia Ashfaq, Muhammad Saud

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The present study aims to highlight the socio-economic aspect of international migration by analyzing the effect of remittances sent by adult male children on the well-being of left behind parents. Well-being of left behind parents was operationalized through two indicators as financial security and health-care facilities. For this purpose, quantitative research design was employed and a survey was conducted in three cities i.e. Gujrat, Jhelum and Mirpur. The data was collected from 94 respondents chosen--purposively--on the basis of certain characteristics including demographic profile of the respondents and their male children who must be living abroad. The findings of the study revealed that parents were getting money from their sons regularly. Parents were getting financial assistance from their children for managing their household expenditures, visiting good hospitals and the specialist doctors in case of illness. Lastly, the study concluded that the economic aspect of migration of male children has a significant impact on the health status of left behind parents with the value of correlation (r) =0.241 and level of significance as 0.019. The research study also gives some suggestions and provides future directions for research.

Keywords: international migration, left behind parents, Pakistan, remittances, well-being

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Authors: Nupur A. D., Miah M. S., Moniruzzaman S. K.

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Autism is a neurobiological disorder that affects physical, social, and language skills of a person. A child with autism feels difficulty for processing, integrating, and responding to sensory stimuli. Current estimates have shown that 45% to 96 % of children with Autism Spectrum Disorder demonstrate sensory difficulties. As autism is a worldwide burning issue, it has become a highly prioritized and important service provision in Bangladesh. The sensory deficit does not only hamper the normal development of a child, it also hampers the learning process and functional independency. The purpose of this study was to find out the prevalence of sensory dysfunction among children with autism and recognize common patterns of sensory dysfunction. A cross-sectional study design was chosen to carry out this research work. This study enrolled eighty children with autism and their parents by using the systematic sampling method. In this study, data were collected through the Short Sensory Profile (SSP) assessment tool, which consists of 38 items in the questionnaire, and qualified graduate Occupational Therapists were directly involved in interviewing parents as well as observing child responses to sensory related activities of the children with autism from four selected autism centers in Dhaka, Bangladesh. All item analyses were conducted to identify items yielding or resulting in the highest reported sensory processing dysfunction among those children through using SSP and Statistical Package for Social Sciences (SPSS) version 21.0 for data analysis. This study revealed that almost 78.25% of children with autism had significant sensory processing dysfunction based on their sensory response to relevant activities. Under-responsive sensory seeking and auditory filtering were the least common problems among them. On the other hand, most of them (95%) represented that they had definite to probable differences in sensory processing, including under-response or sensory seeking, auditory filtering, and tactile sensitivity. Besides, the result also shows that the definite difference in sensory processing among 64 children was within 100%; it means those children with autism suffered from sensory difficulties, and thus it drew a great impact on the children’s Daily Living Activities (ADLs) as well as social interaction with others. Almost 95% of children with autism require intervention to overcome or normalize the problem. The result gives insight regarding types of sensory processing dysfunction to consider during diagnosis and ascertaining the treatment. So, early sensory problem identification is very important and thus will help to provide appropriate sensory input to minimize the maladaptive behavior and enhance to reach the normal range of adaptive behavior.

Keywords: autism, sensory processing difficulties, sensory profile, occupational therapy

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Authors: D. F. Zeynalov, T. V. Kartseva, O. V. Sorokin

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Currently, approaches to assess cardiointervalography are based on the calculation of data variance intervals RR. However, they do not allow the evaluation of features related to a period of the cardiac cycle, so how electromechanical phenomena during cardiac subphase are characterized by differently directed changes. Therefore, we have proposed a method of subphase analysis of the cardiac cycle, developed in the department of hominal physiology Novosibirsk State Medical University to identify the features of the dispersion subphase of the cardiac cycle. In the present paper we have examined the 5-minute intervals cardiointervalography (CIG) to isolate RR-, QT-, ST-ranges in healthy children and children with acute respiratory diseases (ARD) in comparison. It is known that primary school-aged children suffer at ARD 5-7 times per year. Consequently, it is one of the most relevant problems in pediatrics. It is known that the spectral indices and indices of temporal analysis of heart rate variability are highly sensitive to the degree of intoxication during immunological process. We believe that the use of subphase analysis of heart rate will allow more thoroughly evaluate responsiveness of the child organism during the course of ARD. The study involved 60 primary school-aged children (30 boys and 30 girls). In order to assess heart rhythm regulation, the record CIG was used on the "VNS-Micro" device of Neurosoft Company (Ivanovo) for 5 minutes in the supine position and 5 minutes during active orthostatic test. Subphase analysis of variance QT-interval and ST-segment was performed on the "KardioBOS" software Biokvant Company (Novosibirsk). In assessing the CIG in the supine position and in during orthostasis of children with acute respiratory diseases only RR-intervals are observed typical trend of general biological reactions through pressosensitive compensation mechanisms to lower blood pressure, but compared with healthy children the severity of the changes is different, of sick children are more pronounced indicators of heart rate regulation. But analysis CIG RR-intervals and analysis subphase ST-segment have yielded conflicting trends, which may be explained by the different nature of the intra- and extracardiac influences on regulatory mechanisms that implement the various phases of the cardiac cycle.

Keywords: acute respiratory diseases, cardiointervalography, subphase analysis, cardiac cycle

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Authors: Wafa Al Jabri

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Sickle cell disease (SCD) is a genetic blood disorder that is characterized by a severe painful crisis. SCD among children requires long term dependencies and high caregiving demands that increase the overall family burdens. It is, therefore, essential to examine, support, and promote the well-being of families of children with SCD. Although there has been considerable progress in the international research on family quality of life (FQOL) in recent years; however, research in this field is relatively recent and diverse. Oman is a country in which family quality of life has definitely been under-researched. Therefore, the purpose of the study is to describe the FQOL in families of children with SCD in Oman. The study will also examine the relationships between child, mother, and family-related factors that may influence the overall FQOL. Theoretical Framework: The study is guided by the unified theory of family quality of life to help in understanding the concept of FQOL and the factors that shape it. Method:A convenience sample of 98 mothers of children with SCD will be recruited from the pediatric hematology clinic at Sultan Qaboos University Hospital in Oman to participate in this descriptive, cross sectional, correlational study. Data will be obtained using a self-administered questionnaire that includes child and mother socio-demographic data, questions about the number of visits and admissions to health care facilities for vaso- occlusive crises (VOCs), the Perceived Stress Scale-10, and the Beachcenter-FQOL scale. Anticipated Results: It is expected to find an association among frequency of VOCs, mother’s perceived stress level, and FQOL in families of children with SCD in Oman. Family type, socio-economic status, and number of SCD children in the family are also expected to influence the overall FQOL. Conclusion: The findings of the study might be pivotal in designing and implementing tailored family-based interventions to improve families’ wellbeing.

Keywords: family quality of life, sickle cell disaes, children, family well-being

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Authors: Laura A. Rodriguez-Villamizar, Alvaro Osornio-Vargas, Brian H. Rowe, Rhonda J. Rosychuk

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Introduction/Objectives: The Census Metropolitan Area of Edmonton (CMAE) has important industrial emissions to the air from the Industrial Heartland Alberta (IHA) at the Northeast and the coal-fired power plants (CFPP) at the West. The objective of the study was to explore the presence of clusters of children asthma ED visits in the areas around the IHA and the CFPP. Methods: Retrospective data on children asthma ED visits was collected at the dissemination area (DA) level for children between 2 and 14 years of age, living in the CMAE between April 1, 2004, and March 31, 2010. We conducted a spatial analysis of disease clusters around putative sources with count (ecological) data using descriptive, hypothesis testing, and multivariable modeling analysis. Results: The mean crude rate of asthma ED visits was 9.3/1,000 children population per year during the study period. Circular spatial scan test for cases and events identified a cluster of children asthma ED visits in the DA where the CFPP are located in the Wabamum area. No clusters were identified around the IHA area. The multivariable models suggest that there is a significant decline in risk for children asthma ED visits as distance increases around the CFPP area this effect is modified at the SE direction with mean angle 125.58 degrees, where the risk increases with distance. In contrast, the regression models for IHA suggest that there is a significant increase in risk for children asthma ED visits as distance increases around the IHA area and this effect is modified at SW direction with mean angle 216.52 degrees, where the risk increases at shorter distances. Conclusions: Different methods for detecting clusters of disease consistently suggested the existence of a cluster of children asthma ED visits around the CFPP but not around the IHA within the CMAE. These results are probably explained by the direction of the air pollutants dispersion caused by the predominant and subdominant wind direction at each point. The use of different approaches to detect clusters of disease is valuable to have a better understanding of the presence, shape, direction and size of clusters of disease around pollution sources.

Keywords: air pollution, asthma, disease cluster, industry

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Authors: B. Rusyidi

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Since 2009, the Indonesian Ministry of Social Affairs has been implementing Program Kesejahteraan Sosial Anak (PKSA) (Child Welfare Program) a conditional cash transfer program that targets neglected children, children with disabilities, street children, children in conflict with the law, and children in need of special protection, all from poor households. PKSA integrates three elements: Transfer of cash, care and social services through social workers, and institutional childcare assistance. This qualitative study analyzed the roles and the challenges of social workers in implementing PKSA and lays out recommendations to inform policy changes. Data were collected in late 2014 from national and local government and non-government child welfare agencies, social workers, and childcare institution representatives through interviews and Focused Group Discussions (FGDs). Field work took place in six districts in the provinces of Jakarta, Central Java and South Sulawesi. The study found that the social workers’ role was significant in facilitating cash transfer, providing education and guidance, and linking children and families to basic social services. This improved utilization of basic social services enhanced children and families’ behaviors and contributed to the well being of the children. However, only a small number of childcare institutions have social workers, leaving many children and families without care and social service linkages, depriving them of rehabilitative components to help them regain their social functions. Some social workers reported their struggles with heavy workloads, lack of professional competencies and training, limited job security, and inadequate professional acknowledgment from other professions. Parts of those challenges were due to the centralized nature of the program and the lack of shared vision and commitment about the child protection system among related government agencies both at the national and local levels. The study highlights the necessity to implement an integrated child protection system, decentralize the PKSA program, and increase the number, competence, case management, and management and monitoring of social workers. The most recent progress of the program and its impacts on social workers are also discussed.

Keywords: child protection, conditional cash transfer, program decentralization, social worker, working conditions

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Authors: Wipada Prasansaph

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The aim of this research is twofold: to develop a local literature (simplified English translation version) reading booklet for Thai primary school children (the fourth graders) and to encourage the love of reading in English by reading local literature. An excerpt from Thai literature namely Phra-apaimani, the reading requirement for Primary 4 was selected to be translated into English in simplified language with cartoon pictures to illustrate the key happenings of the story. After the first draft of the booklet development, the samples of the booklets were distributed to 3 educator experts to call for validity and comments on 1) the appropriateness of the English language, 2) the organization of the booklet, 3) the comprehension of the story, and 4) the relevance to the core curriculum of Basic Education of Thailand (B.E.2551). The IOC (Index of Item – Objective Congruence) was 0.9 indicated that the material is applicable (with some comments and suggestions). After the first amendment, the booklets were distributed to 30 fourth graders (in 3 schools – 10 in each school), 10 English teachers of Primary 4, and 10 educational supervisors for English subjects (in primary level) to call for comments on 1) the comprehension of the story 2) the organization of the booklet, and 3) the encouragement for the love of reading in English. The English reading booklet on Phra-apaimani for Thai primary children, the IOC questionnaire (with the open-ended questions) for the educator experts, and the rating scales for the students, the teachers, and the educational supervisors were used as the instruments of the research. The findings revealed that most students rated ‘positive’ level for the comprehension of the story, while the teachers and the educational supervisors rated ‘highly positive’. The 3 groups rated ‘highly positive’ for both the organization of the booklet and for the encouragement for the love of reading in English. It is recommended that there should be more production of English reading texts for children, especially the texts that children already have some background knowledge. Moreover, illustration is the most crucial part for the children’s reading texts.

Keywords: English language, reading skill, primary children, Thai literature

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Authors: Bindu S., Malavika Anakkathil Anil, Jayashree S. Bhat

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The dyadic interaction between the parent and child during story narration facilitates the emergence of early literacy skills. Early shared reading experiences positively predict better reading and language outcomes in children who experience rich communicative and effective interactions during shared book reading. However, research is yet to systematically explore mother’s perspective towards story narration and how employment may influence their perspectives. The study analysed the perspectives of employed and unemployed mothers of typically developing children between the age ranges of 2 to 5 years through a questionnaire which covered domains on story narration exposure and parental attitudes & beliefs. The results indicate no statistical difference between employed mothers (M=8.5, SD=3.4) and unemployed mothers (M=10.1, SD=1.06). Whereas, post-hoc comparisons using the scheffe test, revealed a significant difference in scores. An increasing score was obtained as the age of the child increased. This change could be attributed due to the integration of children in preschools which could have contributed to the change of perception towards story narration. Older children’s mother perceive story narration to be an important part of their curriculum, which could facilitate rich vocabulary and language output. Younger children’s parents are however not realising the significance of story narration and its impact on the emergent literacy skills. Parent-child interaction is a significant contributor to a healthy social and cultural development. The study emphasises on the need of mothers to engage in preliteracy based activities which contribute to better academic performance in later stages.

Keywords: early literacy skill, employment, language development, mother’s perspective, story narration

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Authors: Mehravar Javid, Stacey Dershewitz, Shohreh Hashemighoochani, Artin Yousefi

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One of the most common reasons for destroying relationships is infidelity. This study was conducted to understand children's experience of infidelity in Iran. In this qualitative research, the interpretive phenomenological approach and theoretical (purposive) sampling method were used, and the data was saturated by conducting semi-structured interviews with eight offspring of families affected by infidelity. All interviews were audio recorded and analyzed on paper after implementation. Acceptability and homogeneity of data were confirmed by different methods. Eight main themes were identified from the participants' statements: description of the family atmosphere, lack of security and distrust, emotional reactions, behavioral reactions, worry about the future, financial problems, mother's physical-psychological state, and mother's coping strategies and offspring's proposed solutions. The children's experiences showed that in addition to causing irreparable harm to the wife, infidelity affected the whole family and caused the children to suffer crucial consequences such as emotional, behavioral, educational, and economic consequences and mistrust.

Keywords: consequences and hurt, infidelity, offspring, phenomenology, qualitative research

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Authors: Meherun Nahar

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Background:The Chittagong Hill Tracts (CHT) is one of the most diverse regions in Bangladesh in terms of geography, ethnicity, culture and traditions of the people and home of thirteen indigenous ethnic people. In Bangladesh indigenous children aged 6-10 years remain out of school, and the majority of those who do enroll drop out before completing primary school. According to different study that the dropout rate of indigenous children is much higher than the estimated national rate, children dropping out especially in the early years of primary school. One of the most critical barriers for these children is that they do not understand the national language in the government pre-primary school. And also their school readiness and development become slower. In this situation, indigenous children excluded from the mainstream quality education. To address this issue Save the children in Bangladesh and other organizations are implementing community-based Mother Tongue-Based Multilingual Education program (MTBMLE) in the Chittagong Hill Tracts (CHT) for improving the enrolment rate in Government Primary Schools (GPS) reducing dropout rate as well as quality education. In connection with that Save the children conducted comparative research in Chittagong hill tracts on children readiness through Mother tongue-based and Non-mother tongue ECCD center. Objectives of the Study To assess Mother Language based ECCD centers and Non-Mother language based ECCD centers children’s school readiness and development. To assess the community perception over Mother Language based and Non-Mother Language based ECCD center. Methodology: The methodology of the study was FGD, KII, In-depth Interview and observation. Both qualitative and quantitative research methods were followed. The quantitative part has three components, School Readiness, Classroom observation and Headteacher interview and qualitative part followed FGD technique. Findings: The interviews with children under school readiness component showed that in general, Mother Language (ML) based ECCD children doing noticeably better in all four areas (Knowledge, numeracy, fine motor skill and communication) than their peers from Non-mother language based children. ML students seem to be far better skilled in concepts about print as most of them could identify cover and title of the book that was shown to them. They could also know from where to begin to read the book or could correctly point the letter that was read. A big difference was found in the area of identifying letters as 89.3% ML students of could identify letters correctly whereas for Non mother language 30% could do the same. The class room observation data shows that ML children are more active and remained engaged in the classroom than NML students. Also, teachers of ML appeared to have more engaged in explaining issues relating to general knowledge or leading children in rhyming/singing other than telling something from text books. The participants of FGDs were very enthusiastic on using mother language as medium of teaching in pre-schools. They opined that this initiative elates children to attend school and enables them to continue primary schooling without facing any language barrier.

Keywords: Chittagong hill tracts, early childhood care and development (ECCD), indigenous, mother language

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Authors: Dorottya Horváth, Andras Lang, Diana Varro-Horvath

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This research activity and study is part of a major research effort to gain an integrative, neuropsychological, and personality psychological understanding of Attention Deficit Hyperactivity Disorder (ADHD) and thus improve the specification of diagnostic and therapeutic care. In the past, the neuropsychology section has investigated working memory, executive function, attention, and behavioural manifestations in children. Currently, we are looking for personality psychological protective factors for ADHD and its symptomatic exacerbation. We hypothesise that secure attachment, adaptive emotion regulation, and high resilience are protective factors. The aim of this study is to measure and report the results of a Hungarian sample of the Cognitive Emotion Regulation Questionnaire for Children (CERQ-k) because before studying groups with different developmental differences, it is essential to know the average scores of groups with neurotypical devel-opment. Until now, there was no Hungarian version of the above test, so we used our own translation. This questionnaire has been developed to assess children's thoughts after experiencing negative life events. It consists of 4-4 items per subscale, for a total of 36 items. The response categories for each item range from 1 (almost never) to 5 (almost always). The subscales were self-blame, blaming others, acceptance, planning, positive refocusing, rumination or thought-focusing, positive reappraisal, putting into perspective, and catastrophizing. The data for this study were collected from 120 children aged 9-14 years. It was analysed using descriptive statistical analysis, where the mean and standard deviation values for each age group, as well as the Cronbach's alpha value, were significant in testing the reliability of the questionnaire. The results showed that the questionnaire is a reliable and valid measuring instrument also on a Hungarian sample. These developments and results will allow the use of a version of the Cognitive Emotion Regulation Questionnaire for children in Hungarian and pave the way for the study of different developmental groups such as children with learning disabilities and/or with ADHD.

Keywords: neurotypical development, emotion regulation, negative life events, CERQ-k, Hungarian average scores

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Authors: Sadhana Ghnayem

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This article examines the relationship between several socio-economic and background variables of Arab-Israeli families and their effect on the conflict management style of forcing, where teenage children are expected to obey their parents without questioning. The article explores the inter-generational gap and the desire of Arab-Israeli parents to force their teenage children to obey without questioning. The independent variables include: the sex of the parent, religion (Christian or Muslim), income of the parent, years of education of the parent, and the sex of the teenage child. We use the dependent variable of “Obedience Without Questioning” that is reported twice: by each of the parents as well as by the children. We circulated a questionnaire and collected data from a sample of 180 parents and their adolescent child living in the Galilee area during 2018. In this questionnaire we asked each of the parent and his/her teenage child about whether the latter is expected to follow the instructions of the former without questioning. The outcome of this article indicates, first, that Christian-Arab families are less authoritarian than Muslims families in demanding sheer obedience from their children. Second, female parents indicate more than male parents that their teenage child indeed obeys without questioning. Third, there is a negative correlation between the variable “Income” and “Obedience without Questioning.” Yet, the regression coefficient of this variable is close zero. Fourth, there is a positive correlation between years of education and obedience reported by the children. In other words, more educated parents are more likely to demand obedience from their children.  Finally, after running the regression, the study also found that the impact of the variables of religion as well as the sex of the child on the dependent variable of obedience is also significant at above 95 and 90%, respectively.

Keywords: conflict, religion, conflict management style, obedience

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Authors: Mehrnoosh Mirzaei

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Children are among the most vulnerable at the occurrence of natural disasters such as earthquakes. Most of the management and measures which are considered for both before and during an earthquake are neither suitable nor efficient for this age group and cannot be applied. On the other hand, due to their age, it is hard to educate and train children to learn and understand the concept of earthquake risk mitigation as matters like earthquake prevention and safe places during an earthquake are not easily perceived. To our knowledge, children’s awareness of such concepts via their own world with the help of games is the best training method in this case. In this article, the researcher has tried to consider the child an active element before and during the earthquake. With training, provided by adults before the incidence of an earthquake, the child has the ability to learn disaster risk reduction (DRR). The focus of this research is on learning risk reduction behavior and regarding children as an individual element. The information of this article has been gathered from library resources, observations and the drawings of 10 children aged 5 whose subject was their conceptual definition of an earthquake who were asked to illustrate their conceptual definition of an earthquake; the results of 20 questionnaires filled in by preschoolers along with information gathered by interviewing them. The design of the suitable educational game, appropriate for the needs of this age group, has been made based on the theory of design with help of the user and the priority of children’s learning needs. The final result is a package of a game which is comprised of a learning table and matching cards showing sign marks for safe and unsafe places which introduce the safe behaviors and safe locations before and during the earthquake. These educational games can be used both in group contexts in kindergartens and on an individual basis at home, and they help in earthquake risk reduction.

Keywords: disaster education, earthquake sign marks, learning table, matching card, risk reduction behavior

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Authors: Farjina Malek, Julie King, Niki Edwards

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Across the globe more than a billion people live with a disability and a further billion people, mostly carers, are indirectly impacted. While prevalence data is problematic, it is estimated that more than 15% of the population in Bangladesh live with a disability. Disability service infrastructure in Bangladesh is under-developed; and consequently, the onus of care falls on family, especially on mothers. Within the caring role, mothers encounter many challenging experiences which are not only due to the lack of support delivered through the Bangladeshi health care system but also related to the existence of stigma and perception around disability in the Bangladeshi society. Within this perception, the causes of disability are mostly associated with 'God’s will'; 'possession of ghosts on the disabled person'; and 'karma or the result of past sins of the family members especially the mothers'. These beliefs are likely to have a significant impact on the well-being of mothers and their caring experience of children with disability. This is an ongoing qualitative study which is conducting in-depth interviews with 30 mothers from five districts (Dhaka, Mymensingh, Manikganj, Tangail, and Gazipur) of Bangladesh with the aim to explore the impact of social perception and stigma around physical disability on the caring role of the mothers of children with physical disability. The major findings of this study show that the social perception around disability and the social expectation from a mother regarding her caring role have a huge impact on the well-being of mothers. Mothers are mostly expected to take their child on their lap to prove that they are ‘good mother’. These practices of lifting their children with physical disability and keeping them on the lap for a long time often cause chronic back pain of the mothers. Existing social beliefs consider disability as a ‘curse’ and punishment for the ‘sins’ of the family members, most often by the mother. Mothers are blamed if they give birth to ‘abnormal’ children. This social construction creates stigma, and thus, the caring responsibility of mothers become more challenging. It also encourages the family and mothers to hide their children from the society and to avoid seeking accessible disability services. The mothers also compromise their careers and social interaction as they have to stay with their children at home, and that has a significant impact on personal wellbeing, income, and empowerment of the mothers. The research is informed by intersectional theory and employed an interpretive phenomenological methodology to explore mothers’ experience of caring their children with physical disability, and the contribution and impact of key relationships within the family and the intersection with community and services.

Keywords: mother, family carer, physical disability, children, social stigma, key relationship

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Authors: Natalia Banasik

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Comprehension of verbal irony is an example of pragmatic competence in understanding figurative language. The knowledge of how it develops may shed new light on the understanding of social and communicative competence that is crucial for one's effective functioning in the society. Researchers agree it is a competence that develops late in a child’s development. One of the abilities that seems crucial for irony comprehension is theory of mind (ToM), that is the ability to understand that others may have beliefs, desires and intentions different from one’s own. Although both theory of mind and irony comprehension require the ability to understand the figurative use of the false description of the reality, the exact relationship between them is still unknown. Also, even though irony comprehension in children has been studied for over thirty years, the results of the studies are inconsistent as to the age when this competence are acquired. The presented study aimed to answer questions about the developmental trajectories of irony comprehension and ascribing function to ironic utterances by preschool children. Specifically, we were interested in how it is related to the development of ToM and how comprehension of the function of irony changes with age. Data was collected from over 150 monolingual, Polish-speaking children and (so far) thirty bilingual children speaking Polish and English who live in the US. Four-, five- and six-year-olds were presented with a story comprehension task in the form of audio and visual stimuli programmed in the E-prime software (pre-recorded narrated stories, some of which included ironic utterances, and pictures accompanying the stories displayed on a touch screen). Following the presentation, the children were then asked to answer a series of questions. The questions checked the children’s understanding of the intended utterance meaning, evaluation of the degree to which it was funny and evaluation of how nice the speaker was. The children responded by touching the screen, which made it possible to measure reaction times. Additionally, the children were asked to explain why the speaker had uttered the ironic statement. Both quantitive and qualitative analyses were applied. The results of our study indicate that for irony recognition there is a significant difference among the three age groups, but what is new is that children as young as four do understand the real meaning behind the ironic statement as long as the utterance is not grammtically or lexically complex also, there is a clear correlation of ToM and irony comprehension. Although four-year olds and six-year olds understand the real meaning of the ironic utterance, it is not earlier than at the age of six when children start to explain the reason of using this marked form of expression. They talk about the speaker's intention to tell a joke, be funny, or to protect the listener's emotions. There are also some metalinguistic references, such as "mommy sometimes says things that don't make sense and this is called a metaphor".

Keywords: child's pragmatics, figurative speech, irony comprehension in children, theory of mind and irony

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Authors: Petcharat Lovichakorntikul, John Walsh

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Meditation is in the process of becoming a globalized practice and its benefits have been widely acknowledged. The first wave of internationalized meditation techniques and practices was represented by Chan and Zen Buddhism and a new wave of practice has arisen in Thailand as part of the Phra Dhammakaya temple movement. This form of meditation is intended to be simple and straightforward so that it can easily be taught to people unfamiliar with the basic procedures and philosophy. This has made Phra Dhammakaya an important means of outreach to the international community. One notable aspect is to encourage adults to become like children to perform it – that is, to return to a naïve state prior to the adoption of ideology as a means of understanding the world. It is said that the Lord Buddha achieved the point of awakening at the age of seven and Phra Dhammakaya has a program to teach meditation to both children and adults. This brings about the research question of how practitioners respond to the practice of meditation and how should they be taught? If a careful understanding of how children behave can be achieved, then it will help in teaching adults how to become like children (albeit idealized children) in their approach to meditation. This paper reports on action research in this regard. Personal interviews and focus groups are held with a view to understanding self-learning methods with respect to Buddhist meditation and understanding and appreciation of the practices involved. The findings are considered in the context of existing knowledge about different learning techniques among people of different ages. The implications for pedagogical practice are discussed and learning methods are outlined.

Keywords: Buddhist meditation, Dhammakaya, meditation technique, pedagogy, self-learning

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Authors: J. R. Ashrapov, G. A. Alihodzhaeva, D. E. Abdullaev, N. R. Kadirbekov

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Diagnosis of brain tumors is one of the challenges, as several central nervous system diseases run the same symptoms. Modern diagnostic techniques such as CT, MRI helps to significantly improve the surgery in the operating period, after surgery, after allowing time to identify postoperative complications in neurosurgery. Purpose: To study the MRI characteristics and localization of brain tumors in children and to detect the postoperative complications in the postoperative period. Materials and methods: A retrospective study of treatment of 62 children with brain tumors in age from 2 to 5 years was performed. Results of the review: MRI scan of the brain of the 62 patients 52 (83.8%) case revealed a brain tumor. Distribution on MRI of brain tumors found in 15 (24.1%) - glioblastomas, 21 (33.8%) - astrocytomas, 7 (11.2%) - medulloblastomas, 9 (14.5%) - a tumor origin (craniopharyngiomas, chordoma of the skull base). MRI revealed the following characteristic features: an additional sign of the heterogeneous MRI signal of hyper and hypointensive T1 and T2 modes with a different perifocal swelling degree with involvement in the process of brain vessels. The main objectives of postoperative MRI study are the identification of early or late postoperative complications, evaluation of radical surgery, the identification of the extended-growing tumor that (in terms of 3-4 weeks). MRI performed in the following cases: 1. Suspicion of a hematoma (3 days or more) 2. Suspicion continued tumor growth (in terms of 3-4 weeks). Conclusions: Magnetic resonance tomography is a highly informative method of diagnostics of brain tumors in children. MRI also helps to determine the effectiveness and tactics of treatment and the follow up in the postoperative period.

Keywords: brain tumors, children, MRI, treatment

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Authors: Yenie Norambuena

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Analogical reasoning is a cognitive process that consists of structured comparisons of mental representations and scheme construction. Because of its heuristic function, it is ubiquitous in cognition and could play an important role in language development. The use of analogies is expressed early in children and this behavior is also reflected in language, suggesting a possible way to understand the complex links between thought and language. The current research examines factors of verbal and non-verbal reasoning that should be taken into consideration in the study of language development for their relations and predictive value. The study was conducted with 48 Chilean preschoolers (Spanish speakers) from 4 to 6-year-old. We assessed children’s verbal analogical reasoning, non-verbal analogical reasoning and linguistics skills (Listening Comprehension, Phonemic awareness, Alphabetic principle, Syllabification, Lexical repetition and Lexical decision). The results evidenced significant correlations between analogical reasoning factors and linguistic skills and they can predict linguistic performance mainly on oral comprehension, lexical decision and phonological skills. These findings suggest a fundamental interrelationship between analogical reasoning and linguistic performance on children’s and points to the need to consider this cognitive process in comprehensive theories of children's language development.

Keywords: verbal analogical reasoning, non-verbal analogical reasoning, linguistic skills, language development

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Authors: M. Siedlikowski, F. Rauch, A. Tsimicalis

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Osteogenesis Imperfecta (OI) is a genetic disorder of childhood onset that causes frequent fractures after minimal physical stress. To date, OI research has focused on medically- and surgically-oriented outcomes with little attention on the perspective of the affected child. It is a challenge to elicit the child’s voice in health care, in other words, their own perspective on their symptoms, but software development offers a way forward. Sisom (Norwegian acronym derived from ‘Si det som det er’ meaning ‘Tell it as it is’) is an award-winning, rigorously tested, interactive, computerized tool that helps children with chronic illnesses express their symptoms to their clinicians. The successful Sisom software tool, that addresses the child directly, has not yet been adapted to attend to symptoms unique to children with OI. The purpose of this study was to develop a Sisom paper prototype for children with OI by seeking the perspectives of end users, particularly, children with OI and clinicians. Our descriptive qualitative study was conducted at Shriners Hospitals for Children® – Canada, which follows the largest cohort of children with OI in North America. Purposive sampling was used to recruit 12 children with OI over three cycles. Nine clinicians oversaw the development process, which involved determining the relevance of current Sisom symptoms, vignettes, and avatars, as well as generating new Sisom OI components. Data, including field notes, transcribed audio-recordings, and drawings, were deductively analyzed using content analysis techniques. Guided by the following framework, data pertaining to symptoms, vignettes, and avatars were coded into five categories: a) Relevant; b) Irrelevant; c) To modify; d) To add; e) Unsure. Overall, 70.8% of Sisom symptoms were deemed relevant for inclusion, with 49.4% directly incorporated, and 21.3% incorporated with changes to syntax, and/or vignette, and/or location. Three additions were made to the ‘Avatar’ island. This allowed children to celebrate their uniqueness: ‘Makes you feel like you’re not like everybody else.’ One new island, ‘About Me’, was added to capture children’s worldviews. One new sub-island, ‘Getting Around’, was added to reflect accessibility issues. These issues were related to the children’s independence, their social lives, as well as the perceptions of others. In being consulted as experts throughout the co-creation of the Sisom OI paper prototype, children coded the Sisom symptoms and provided sound rationales for their chosen codes. In rationalizing their codes, all children shared personal stories about themselves and their relationships, insights about their OI, and an understanding of the strengths and challenges they experience on a day-to-day basis. The child’s perspective on their health is a basic right, and allowing it to be heard is the next frontier in the care of children with genetic diseases. Sisom OI, a methodological breakthrough within OI research, will offer clinicians an innovative and child-centered approach to capture this neglected perspective. It will provide a tool for the delivery of health care in the center that established the worldwide standard of care for children with OI.

Keywords: child health, interactive computerized communication tool, participatory approach, symptom management

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