Search results for: parents with intellectual disability

Authors: A. Benedetto, P. Wong, N. Papouchis, L. W. Samstag

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Bowen’s concept of self-differentiation describes a healthy balance of autonomy and intimacy in close relationships, and it has been widely researched in the context of family dynamics. The current study aimed to clarify the impact of family dysfunction on self-differentiation by specifically examining conflict between parents, and by including young adults, an underexamined age group in this domain (N = 300; ages 18 to 30). It also identified a protective factor for offspring from conflictual homes. The 300 young adults (recruited online through Mechanical Turk) completed the Differentiation of Self Inventory (DSI), the Children’s Perception of Interparental Conflict Scale (CPIC), the Parental Bonding Instrument (PBI), and the Symptom Checklist-90-Revised (SCL-90-R). Analyses revealed that interparental conflict significantly impairs self-differentiation among young adult offspring. Specifically, exposure to parental conflict showed a negative impact on young adults’ sense of self, emotional reactivity, and interpersonal cutoff in the context of close relationships. Parental conflict was also related to increased psychological distress among offspring. Surprisingly, the study found that parental divorce does not impair self-differentiation in offspring, demonstrating the distinctly harmful impact of conflict. These results clarify a unique type of family dysfunction that impairs self-differentiation, specifically in distinguishing it from parental divorce; it examines young adults, a critical age group not previously examined in this domain; and it identifies a moderating protective factor (a strong parent-child bond) for offspring exposed to conflict. Overall, results suggest the need for modifications in parental behavior in order to protect offspring at risk of lasting emotional and interpersonal damage.

Keywords: divorce, family dysfunction, parental conflict, parent-child bond, relationships, self-differentiation, young adults

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Authors: Johnson-Egemba Helen Amaka

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Music is emotional in the sense that it controls people’s feelings. The way and manner people react to music at a point in time depend on the type of music that is playing. Music can make someone to march or dance, to cry or laugh, to be happy or sad, to fight or make peace and so on. It therefore makes someone o exhibit some kind of behaviours, either positive or negative. Even dangerous animals have been found to be controlled by music. In the psychiatric homes, mad people are always found to be dancing to music. During funeral ceremony, music singing and dancing are sources of comfort to the bereaved. As a background to the study, Tarok ethnic group in Plateau State was used. The Tarok comprise of Langtang North and South Local Government Areas. The ethnic group of Tarok integrates music in almost all the activities of their lives. A total of six (6) types of folk songs were identified. These songs range from marriages, funeral, royalty, togetherness, war, rituals, festivals, and farming. This paper points out the significance of basic responsiveness of the Tarok people towards the folk songs, their reaction generally whether positive or negative. The methods of data collection employed in this work include oral interview approach, recording of various types of Tarok folk songs, consulting of journals, magazines and textbooks. The researcher used oral interview as her primary source of information which is found to be the most effective procedure in carrying out this task. The songs were textually analyzed with a view to unveiling their meanings, thought processes, and conveying their direction and functions within the context of their rendition. The major findings of the study are that music in Tarok culture covers the physical, mental, emotional and social experiences. The physical aspect is the motor skills, which include dancing and demonstration of the songs. The mental experiences are intellectual levels which include construction and manufacturing of musical instruments, composing songs, teaching and learning etc. Furthermore, this research provided in addition to musical activities, the literature, history and culture of the Tarok communities.

Keywords: cultural, music, practice, responsiveness

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Authors: Hanan Khojah, RuAngelie Edrada-Ebel

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Neurodegenerative disease including Alzheimer’s disease is a major cause of long-term disability. Oxidative stress is frequently implicated as one of the key contributing factors to neurodegenerative diseases. Protection against neuronal damage remains a great challenge for researchers. Ficus carica (commonly known as fig) is a species of great antioxidant nutritional value comprising a protective mechanism against innumerable health disorders related to oxidative stress as well as Alzheimer’s disease. The purpose of this work was to characterize the non-polar active metabolites in Ficus carica endocarp, mesocarp, and exocarp. Crude extracts were prepared using several extraction solvents, which included 1:1 water: ethylacetate, acetone and methanol. The dried extracts were then solvent partitioned between equivalent amounts of water and ethylacetate. Purification and fractionation were accomplished by high-throughput chromatography. The isolated metabolites were tested on their effect on human neuroblastoma cell line by cell viability test and cell cytotoxicity assay with acrolein. Molecular weights of the active metabolites were determined via LC–HRESIMS and GC-EIMS. Metabolomic profiling was performed to identify the active metabolites by using differential expression analysis software (Mzmine) and SIMCA for multivariate analysis. Structural elucidation and identification of the interested active metabolites were studied by 1-D and 2-D NMR. Significant differences in bioactivity against a concentration-dependent assay on acrolein radicals were observed between the three fruit parts. However, metabolites obtained from mesocarp and the endocarp demonstrated bioactivity to scavenge ROS radical. NMR profiling demonstrated that aliphatic compounds such as γ-sitosterol tend to induce neuronal bioactivity and exhibited bioactivity on the cell viability assay. γ-Sitosterol was found in higher concentrations in the mesocarp and was considered as one of the major phytosterol in Ficus carica.

Keywords: alzheimer, Ficus carica, γ-Sitosterol, metabolomics

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Authors: Bindu I. Somarajan, Viney Gupta, Gagandeep Kaur Walia, Jasbir Kaur, Sunil Kumar, Shikha Gupta, Abadh K. Chaurasia, Dinesh Gupa, Abhinav Kaushik, Aditi Mehta, Vipin Gupta, Arundhati Sharma

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Background: Juvenile onset primary open angle glaucoma (JOAG), affects individuals under the age of 40 years. Studies on a few families of JOAG, that led to the discovery of the Myocilin gene, reported the disease to have an autosomal dominant pattern of inheritance. However, sporadic forms of JOAG been seen to be more common in some populations. Most pathological homozygous mutations in the CYP1B1 gene associated with JOAG have been seen among sporadic cases. Given the higher prevalence of sporadic JOAG cases in our population, we aimed to look for common mutations E229K and R368H, the two most common variants in the CYP1B1 gene associated with glaucoma. Objective: To determine the frequency and evaluate genotype phenotype correlation of CYP1B1 E229K and R368H mutations in a cohort of 120 sporadic Juvenile open angle glaucoma patients.Methods: Unrelated JOAG patients whose first degree relatives had been examined and found to be unaffected were included in the study. The patients and their parents were screened for E229K and R368H mutations. The phenotypic characteristics were compared between probands with and with out these mutations by SPSS v16. Results: Out of 120 JOAG patients included in the study, the E229K mutation was seen in 9 probands (7.5%) and R368H in 7 (5.8%). The average age of onset of the disease (p=0.3) and the highest untreated IOP (p=0.4) among those carrying mutations was not significantly different from those who did not have these mutations. The proportion of probands with angle dysgenesis among those with E229K and R368H mutations was 70% (11 out of 16) in comparison to 65% (67 out of 104) of those who did not harbour these mutations (p=0.56). Similarly the probands with moderate to high myopia among those with E229K and R368H mutations was 20% (3 out of 16) in comparison to 18% (18 out of 104) of those who did not harbour these mutations(p=0.59). Conclusion: The frequency of E229K and R368H mutations of the CYP1B1 gene is low even among sporadic JOAG patients. Moreover there is no clinical correlation between the presence of these mutations and disease severity

Keywords: CYP1B1, gene, IOP, JOAG, mutation

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Authors: Yu-Ching Liu

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Background: Family numbers usually take responsibility for taking care of their elderly relatives, especially parents. Caring for a patient with chronic diseases is a stressful experience, which makes carers suffer physical and mental health stress, difficulties maintaining family relationships and issues in participating in the labor market, which may lower their quality of life (QoL). The issue of providing care to relatives with chronic illness has been widely explored in Taiwan, but most studies focus on the need for full-time caregivers. Objective: The main goal of this study was to examine the topic of working carers involved in the decision-making process of LTC services and to explore what affects working carers considering when they choose the care services for their disabled, elderly relatives. Method: A total of 7 working caregivers were enrolled in this study. A face-to-face and semi-structured in-depth qualitative interview study were conducted to explore the caregivers' perspectives. Results: Working carers have a positive experience of using LTC service because it allows them to kill two birds with one stone, continue employment, and care for an elderly disabled relative. However, working carers have still been struggling to find friendly community-based LTC services. There were no longer available community services that could be used with the illness condition of patients getting worse. As such, patients have to be cared for at home, which might increase the caregiver burden of carers. Conclusion: Working family caregivers suffer from heavy physical and psychological burdens as they not only have to maintain their employment but care for elderly disabled relatives; however, the current support provided is insufficient. The design of services should consider working carers' employment situation and need rather than the only caring situation of patients at home.

Keywords: family caregiver, Long-term care, work-life balance, decision-making

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Authors: Tracey Jean Boisseau

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Recently, the rise of concerted right-wing and authoritarian movements has put feminists as well as women, queer, trans, and non-binary folk, immigrants, refugees, the global poor, and people of color in their crosshairs. The U.S. is seeing unprecedented attacks on liberal democratic institutions, escalating “culture wars,” and increased anti-intellectual vitriol specifically targeting feminist and anti-racist educators and scholars. Such vitriol has fueled new legislation curtailing or outright banning of “gender studies” for its ideological commitment to theorizing gender identity as a cultural construct and an inherently political project rather than a “natural” binary that can not be contested or interrogated. At the same time, across the globe—in Afghanistan, Argentina, Brazil, France, Haiti, Hungary, Kenya, Nicaragua, Nigeria, Pakistan, the Philippines, Poland, Russia, South Korea, Sweden, Turkey, Uganda, the United Kingdom, and elsewhere—emergent anti-feminist, nativist, and white-supremacist political parties, as well as established autocratic and authoritarian regimes, have instituted blatantly misogynistic, anti-queer, and anti-trans legislation, often accompanied by governmental and extra-governmental policies explicitly intended to marginalize, erase, suppress, or extinguish gender studies as a legitimate academic discipline, topic of research, and teaching field. This paper considers the origins and effects of such legislation -as well as the strategies exhibited by practitioners of gender studies to counter these effects and resist erasure- from a cross-cultural perspective. The research underpinning this paper’s conclusions includes a survey of nearly 2000 gender studies programs in the U.S. and interviews with dozens of gender studies scholars and administrative leaders of gender-studies programs located worldwide. The goal of this paper is to illuminate distinctions, continuities, and global connections between anti-gender studies legislation that emanates from within national borders but arises from rightwing movements that supercede those borders, and that, ultimately, require globalist responses.

Keywords: anti-feminist, anti-LGBTQ, legislation, criminalization, authoritarianism, globalization

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Authors: C. A. Bradley, D. Patsios, D. Berridge

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This paper presents evidence to better understand the risk and protective factors related to sibling conflict and the patterns of association between sibling conflict and negative adjustment outcomes by incorporating additional familial and societal factors within statistical models of risk and adjustment. It was conducted through the secondary analysis of a large representative cross-sectional dataset of children in the UK. The original study includes proxy interviews for young children and self-report interviews for adolescents. The study applies an ecological systems framework for the analyses. Hierarchical regression models assess risk and protective factors and adjustment outcomes associated with sibling conflict. Interactions reveal differential effect between contextual risk factors and the social context of influence. The general pattern of findings suggested that, although factors affecting likelihood of experiencing sibling conflict were often determined by child age, some remained consistent across childhood. These factors were often conditional on each other, reinforcing the importance of an ecological framework. Across both age-groups, sibling conflict was associated with siblings closer in age; male sibling groups; most advantaged socio-economic group; and exposure to community violence, such as witnessing violent assault or robbery. The study develops the evidence base on the influence of ethnicity and socio-economic group on sibling conflict by exploring interactions between social context. It also identifies key new areas of influence – such as family structure, disability, and community violence in exacerbating or reducing risk of conflict. The study found negative associations between sibling conflict and young children’s mental well-being and adolescents' mental well-being and anti-social behaviour, but also more context specific associations – such as sibling conflict moderating the negative impact of adversity and high risk experiences for young children such as parental violence toward the child.

Keywords: adjustment, conflict, ecological systems, family systems, risk and protective factors, sibling

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Authors: Long Zhang, Ian Hampson, Loretta O' Donnell

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Practitioners in various industries, especially in the finance industry that conventionally benefit from financial capital and resources, appear to be increasingly aware of the importance of human capital resources (HCR) after the 2008 Global Financial Crisis. Scholars from diverse fields have conducted extensive and fruitful research on HCR within their own disciplines. This review suggests that the mainstream of pure quantitative research alone is insufficient to provide precise or comprehensive understanding of HCR. The complex relationships and interactions in HCR call for more integrative and cross-disciplinary research to more holistically understand complex and intricate HCRs. The complex nature of HCR requires deep qualitative exploration based on in-depth data to capture the everydayness of organizational activities and to register its individuality and variety. Despite previous efforts, a systematic and holistic integration of HCR research among multiple disciplines is lacking. Using a retrospective analysis of articles published in the field of economics, finance and management, including psychology, human resources management (HRM), organizational behaviour (OB), industrial and organizational psychology (I-O psychology), organizational theory, and strategy literatures, this study summaries and compares the major perspectives, theories, and findings on HCR research. A careful examination of the progress of the debates of HCR definitions and measurements in distinct disciplines enables an identification of the limitations and gaps in existing research. It enables an analysis of the interplay of these concepts, as well as that of the related concepts of intellectual capital, social capital, and Chinese guanxi, and how they provide a broader perspective on the HCR-related influences on firms’ competitive advantage. The study also introduces the themes of Environmental, Social and Governance, or ESG based investing, as the burgeoning body of ESG studies illustrates the rising importance of human and non-financial capital in investment process. The ESG literature locates HCR into a broader research context of the value of non-financial capital in explaining firm performance. The study concludes with a discussion of new directions for future research that may help advance our knowledge of HCR.

Keywords: human capital resources, social capital, Chinese guanxi, human resources management

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Authors: Yavuz Erdoğan, Hidayet Çiftçi

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Cyberbullying, a phenomenon among adolescents, is defined as actions that use information and communication technologies such as social media to support deliberate, repeated, and hostile behaviour by an individual or group. With the advancement in communication and information technology, cyberbullying has expanded its boundaries among students in schools. Thus, parents, psychologists, educators, and lawmakers must become aware of the potential risks of this phenomenon. In the light of these perspectives, this study aims to investigate the relationships between cyberbullying perception and Facebook attitudes of Turkish students. A survey method was used for the study and the data were collected by “Cyberbullying Perception Scale”, “Facebook Attitude Scale” and “Personal Information Form”. For this purpose, study has been conducted during 2014-2015 academic year, with a total of 748 students with 493 male (%65.9) and 255 female (%34.1) from randomly selected high schools. In the analysis of data Pearson correlation and multiple regression analysis, multivariate analysis of variance (MANOVA) and Scheffe post hoc test has been used. At the end of the study, the results displayed a negative correlation between Turkish students’ Facebook attitudes and cyberbullying perception (r=-.210; p<0.05). In order to identify the predictors of students’ cyberbullying perception, multiple regression analysis was used. As a result, significant relations were detected between cyberbullying perception and independent variables (F=5.102; p<0.05). Independent variables together explain 11.0% of the total variance in cyberbullying scores. The variables that significantly predict the students’ cyberbullying perception are Facebook attitudes (t=-5.875; p<0.05), and gender (t=3.035; p<0.05). In order to calculate the effects of independent variables on students’ Facebook attitudes and cyberbullying perception MANOVA was conducted. The results of the MANOVA indicate that the Facebook attitudes and cyberbullying perception were significantly differed according to students’ gender, age, educational attainment of the mother, educational attainment of the father, income of the family and daily usage of internet.

Keywords: facebook, cyberbullying, attitude, internet usage

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Authors: Maureen Royce, Joshi Jariwala, Sally Kah

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Change is inevitable, but the change process is progressive. Organisational change is the process in which an organisation changes strategies, operational methods, systems, culture, and structure to affect something different in the organisation. This process can be continuous or developed over a period and driven by internal and external factors. Organisational change is essential if organisations are to survive in dynamic and uncertain environments. However, evidence from research shows that many change initiatives fail, leading to severe consequences for organisations and their resources. The complex models of third sector organisations, i.e., social enterprise, compounds the levels of change in these organisations. Interestingly, innovation is associated with a change in social enterprises due to the hybridity of product and service development. Furthermore, the creation of social intervention has offered a new process and outcomes to the lifecycle of change. Therefore, different forms of organisational innovation are developed, i.e., total, evolutionary, expansionary, and developmental, which affect the interventions of social enterprises. This raises both theoretical and business concerns on how the competing hybrid nature of social enterprises change, how change is managed, and the impact on these organisations. These perspectives present critical questions for further investigation. In this study, we investigate the impact of organisational change on employees and organisational development at DaDaFest –a disability arts organisation with a social focus based in Liverpool. The three main objectives are to explore the drivers of change and the implementation process; to examine the impact of organisational change on employees and; to identify barriers to organisation change and development. To address the preceding research objectives, qualitative research design is adopted using semi-structured interviews. Data is analysed using a six-step thematic analysis framework, which enables the study to develop themes depicting the impact of change on employees and organisational development. This study presents theoretical and practical contributions for academics and practitioners. The knowledge contributions encapsulate the evolution of change and the change cycle in a social enterprise. However, practical implications provide critical insights into the change management process and the impact of change on employees and organisational development.

Keywords: organisational change, change management, organisational change system, social enterprise

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Authors: S. B. Otieno1, F. Were, A. Afullo, K. Waza

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Background: Multi drug resistance HIV has emerged rendering the current conventional treatment of HIV ineffective. There is a need for new treatment regime which is cheap, effective and not prone to resistance development by HIV. Methods: In randomized clinical study of 68 HIV positive children 3 – 15 years to asses the efficacy of yeast selenium in HIV/AIDS patients, 50μ yeast selenium was administered to 34 children while in matched control of 34 were put on placebo. Blood samples and weight of the both groups which were taken every 3 months intervals up to 6 months, were analyzed by ELIZA for CD4T cells, the data was analyzed by SPSS version 16, WAZ scores were analyzed by Epi Info version 6. Results: No significant difference in age { χ2 (1, 62) =0.03, p =0.853}, cause of morbidity between test and controls {χ2 (1, 65) = 5.87, p= 0.015} and on condition of foster parents {χ2 ( 1,63) = 5.57, p= 0.0172} was observed. Children on selenium showed progressive improvement of WAZ and significant difference at six months {F (5,12) = =5.758, P=0.006}, and weight gain of up to 4.1 kilograms in six months, and significant CD4 T cell count increase t= -2.943, p<0.05 compared to matched controls t = -1.258 p> 0.05. CD4 T cell count increased among all age groups on test 3-5 years (+ 267.1),5-8 years (+200.3) 9-15 years (+71.2) cells/mm3 and in matched controls a decrease 3-5 years (-71), 5-8 years (-125) and 9-13 years (-10.1) cells/mm3 . No significant difference inCD4 T cell count between boys {F (2, 32) = 1.531 p= 0.232} and between boys {F (2, 49) = 1.040, p= 0.361} on test and between boys and girls {F (5, 81) = 1.379, p= 0.241} on test. Similarly no significant difference between boys and girls were observed {F (5, 86) = 1.168, p= 0.332}.In the test group there was significant positive correlation β =252.23 between weight for age (WAZ), and CD4 T Cell Count p=0.007, R2= 0.252, F< 0.05. In matched controls no significant correlation between weight gain and CD4 T cell count change was observed at six months p > 0.05. No positive correlation β =-138.23 was observed between CD4T Cell count, WAZ, p=0.934, R2 =0.0337 F >0.05. Majority (96.78%) of children on test either remained or progressed to WHO immunological stage I. Conclusion: From this study it can be concluded that yeast Selenium is effective in slowing the progress of HIV 1 in children from WHO clinical stage I by improving CD4 T cell count and hence the immunity.

Keywords: selenium, HIV, AIDS, WAZ

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Authors: Mimoza Canga, Irene Malagnino, Ruzhdie Qafmolla, Vergjini Mulo, Gresa Baboci, Vito Antonio Malagnino

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Background: Dental caries represents the most widespread pathology in childhood. The prevalence of dental caries varies with age, gender, socio economic status, geographical location, nutrition habits, and oral hygiene. Objective: The objective of the present longitudinal study is to show clearly the prevalence of dental caries in the children of age 6 and 7 years old in Vlore, Albania, in a two year time period with controls done every 6 months. Materials and methods: The present study was conducted on 530 children, with a controlled sample for a time period of 24 months from September 2019- September 2021. The children in the study had different economic and social backgrounds. The teeth controls were done by the dentists who work at the hospital of the city. The present study was conducted in accordance with Helsinki declaration. Permissions were obtained in written form, which allowed us to perform the observations. Parents had the right to withdraw their children at any time. Statistical analysis was performed using IBM SPSS Statistics 23.0. The significance level (α) was set at 0.05, whereas P-value and analysis of variance (ANOVA) were used to analyze the data. Results: The data of the present study showed that the age group of 6 years old had 139 or 52.3% of the children with dental caries and 127 or 47.7% of them had no dental caries, while at the age of 7 there were 184 or 69.7% of the children with dental caries problems in the permanent molars and 80 or 30.3% of them had no dental caries. In the present study, it was observed that there is a statistically significant association between age group and presence of caries. Children 7 years old had higher presence of dental caries (χ2 = 16.934 (df 1) p-value < 0.001). According to the present research, there is a statistically significant correlation between period of time and the presence of dental caries. Furthermore, in the actual research, it was established that in the time 18-24 months, the prevalence of dental caries was high (χ2=15,318 (df 1) p-value = 0.004). Conclusion: According to the results of the present study performed in Albania in a two year time period with controls done every 6 months, it is proved that the prevalence of dental caries was 17.4 percent higher among children 7 years old in comparison with the children 6 years old.

Keywords: age, children, dental caries, permanent molars

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Authors: Joanna Estkowska

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The Sensory Integration Method is aimed primarily at children with learning disabilities. It can also be used as a complementary method in treatment of children with cerebral palsy, autistic, mentally handicapped, blind and deaf. Autism is holistic development disorder that manifests itself in the specific functioning of a child. The most characteristic are: disorders in communication, difficulties in social relations, rigid patterns of behavior and impairment in sensory processing. In addition to these disorders may occur abnormal intellectual development, attention deficit disorders, perceptual disorders and others. This study was focused on the application sensory integration techniques in science education of autistic students. The lack of proper sensory integration causes problems with complicated processes such as motor coordination, movement planning, visual or auditory perception, speech, writing, reading or counting. Good functioning and cooperation of proprioceptive, tactile and vestibular sense affect the child’s mastery of skills that require coordination of both sides of the body and synchronization of the cerebral hemispheres. These include, for example, all sports activities, precise manual skills such writing, as well as, reading and counting skills. All this takes place in stages. Achieving skills from the first stage determines the development of fitness from the next level. Any deficit in the scope of the first three stages can affect the development of new skills. This ultimately reflects on the achievements at school and in further professional and personal life. After careful analysis symptoms from the emotional and social spheres appear to be secondary to deficits of sensory integration. During our research, the students gained knowledge and skills in the classroom of experience by learning biology, chemistry and physics with application sensory integration techniques. Sensory integration therapy aims to teach the child an adequate response to stimuli coming to him from both the outside world and the body. Thanks to properly selected exercises, a child can improve perception and interpretation skills, motor skills, coordination of movements, attention and concentration or self-awareness, as well as social and emotional functioning.

Keywords: autism spectrum disorder, science education, sensory integration, special educational needs

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Authors: Antonia Harold-Barry, Eugene Dempsey

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Background: The objective is to examine the survival and outcome of infants born under 26 weeks gestation in an Irish tertiary maternity hospital from 2007-2016 and to describe the survival and neurodevelopmental outcomes of these extremely preterm infants. Method: The population is 132 infants born at 23, 24, and 25 weeks in Cork University Maternity Hospital from 2007 to 2016. Ethical approval was granted by the Cork Clinical Research Ethics Committee. Patient details were obtained from the Vermont Oxford and Badger Networks. Survival rates and Bayley scores were calculated to assess neurodevelopmental outcomes. Statistical analysis with SPSS included frequencies, distributions, and comparisons between data from 2007-2011 and 2012-2016. Results: Overall survival rate was 63%. Of the surviving babies, 61% had Bayley scores calculated. Survival stood at 39% for delivery at 23 weeks, 50% at 24 weeks, and 83% at 25 weeks. The 2012 to 2016 cohort has shown further increases in survival, with 50% of babies at 23 weeks, 58% at 24 weeks, and 89% at 25 weeks. Corresponding figures for 2007-2011 are 20%, 39%, and 75%. Gestational age and incidence of periventricular leukomalacia were statistically significant, with a p-value of 0.022. Gestational age and delivery room deaths had a p-value of 0.025, as did gestational age and birth weight. A comparison of the two cohorts (2007-2011 and 2012-2016) with the administration of antenatal steroids showed a statistically significant p-value of 0.044. Conclusion: There is less morbidity and mortality in infants born at 25 than at 23 or 24 weeks. Survival of extremely premature infants has increased significantly over the past ten years. Survival rates with normal neurodevelopmental outcomes are comparable with international standards and reflect positive changes in attitude and practices in neonatal intensive care. This study will inform parents about the potential outcomes of extreme prematurity and policy regarding the management of extreme prematurity.

Keywords: extreme of viability, neurodevelopmental outcome, periventricular leukomalacia, prematurity

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Authors: Rajlakshmi Guha, Sajjad Ansari, Shazia Nasreen, Hirak Banerjee, Jiaul Paik

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Dyslexia is a neurocognitive disorder, affecting around fifteen percent of the Indian population. The symptoms include difficulty in reading alphabet, words, and sentences. This can be difficult at the phonemic or recognition level and may further affect lexical structures. Therapeutic intervention of dyslexic children post assessment is generally done by special educators and psychologists through one on one interaction. Considering the large number of children affected and the scarcity of experts, access to care is limited in India. Moreover, unavailability of resources and timely communication with caregivers add on to the problem of proper intervention. With the development of Educational Technology and its use in India, access to information and care has been improved in such a large and diverse country. In this context, this paper proposes an ICT enabled home-based intervention program for dyslexic children which would support the child, and provide an interactive interface between expert, parents, and students. The paper discusses the details of the database design and system layout of the program. Along with, it also highlights the development of different technical aids required to build out personalized android applications for the Indian dyslexic population. These technical aids include speech database creation for children, automatic speech recognition system, serious game development, and color coded fonts. The paper also emphasizes the games developed to assist the dyslexic child on cognitive training primarily for attention, working memory, and spatial reasoning. In addition, it talks about the specific elements of the interactive intervention tool that makes it effective for home based intervention of dyslexia.

Keywords: Android applications, cognitive training, dyslexia, intervention

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Authors: Mahmood Shamshiri

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While visual sensation is the key gate for human-being to understand the world, visual impairment is one of the common cause of disability around the world. There is no doubt about the importance of eye sight in daily life among people, even it is understood the best gift of God to human-beings in many societies. Blind people are admitted to hospital for different health issues. Nurses and other health professionals who provide care for this group of patients need to understand their patients. Understanding the lived experience of blind people helps nurses to expand their knowledge regarding blind patients in order to provide a holistic care and improve the quality of care for blind patients. This phenomenological inquiry aimed to describe the meaning of discipline in daily life of blind people admitted in hospital. An interpretive phenomenology underpinned the philosophical approach of the study. While the interpretive phenomenology played as an umbrella role in the overall point of the study, the six methodical activities which introduced by van Manen helped the researchers to conduct the study. ‘Disciplined care for disciplined patients’ was the main theme emerged from dialogues of blind patients about their daily life in the hospital. Almost all of participants called themselves as disciplined people. The theme ‘disciplined care for disciplined patients’ appeared from four sub-themes including discipline through careful touching and listening, discipline as the ideal way of existence, discipline the preferred way of being independent, desire to take disciplined and detailed care, reactions to the undisciplined caring culture. This phenomenological inquiry to the experiences of patients with blindness in hospital revealed that they commonly are disciplined people and want to be cared in well-organized caring environment. Furthermore, they need to be familiar with the new caring environment. Well-organized and familiar environment help blind patients to increase the level of independency. In addition, blind patients prefer a detail informed and disciplined caring culture. Health professionals have to consider the concept of disciplined care in order to provide a holistic and comprehensive competent care.

Keywords: disciplined people, disciplined care, lived experience, patient with blindness

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Authors: Oktavian Prasetia Wardana, Martono Tri Utomo, Risa Etika, Kartika Darma Handayani, Dina Angelika, Wurry Ayuningtyas

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Background: Critically ill neonates are newborn babies with high-risk factors that potentially cause disability and/or death. Scoring systems for determining the severity of the disease have been widely developed as well as some designs for use in neonates. The SNAPPE-II method, which has been used as a mortality predictor scoring system in several referral centers, was found to be slow in assessing the outcome of critically ill neonates in the Neonatal Intensive Care Unit (NICU). Objective: To analyze the predictive value of MSNS on the outcome of critically ill neonates at the time of arrival up to 24 hours after being admitted to the NICU. Methods: A longitudinal observational analytic study based on medical record data was conducted from January to August 2022. Each sample was recorded from medical record data, including data on gestational age, mode of delivery, APGAR score at birth, resuscitation measures at birth, duration of resuscitation, post-resuscitation ventilation, physical examination at birth (including vital signs and any congenital abnormalities), the results of routine laboratory examinations, as well as the neonatal outcomes. Results: This study involved 105 critically ill neonates who were admitted to the NICU. The outcome of critically ill neonates was 50 (47.6%) neonates died, and 55 (52.4%) neonates lived. There were more males than females (61% vs. 39%). The mean gestational age of the subjects in this study was 33.8 ± 4.28 weeks, with the mean birth weight of the subjects being 1820.31 ± 33.18 g. The mean MSNS score of neonates with a deadly outcome was lower than that of the lived outcome. ROC curve with a cut point MSNS score <10.5 obtained an AUC of 93.5% (95% CI: 88.3-98.6) with a sensitivity value of 84% (95% CI: 80.5-94.9), specificity 80 % (CI 95%: 88.3-98.6), Positive Predictive Value (PPV) 79.2%, Negative Predictive Value (NPV) 84.6%, Risk Ratio (RR) 5.14 with Hosmer & Lemeshow test results p>0.05. Conclusion: The MSNS score has a good predictive value and good calibration of the outcomes of critically ill neonates admitted to the NICU.

Keywords: critically ill neonate, outcome, MSNS, NICU, predictive value

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Authors: Aleema Rahman

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Introduction: This study aims to estimate the prevalence of long-term otitis media with effusion (OME) and hearing loss in a prospective longitudinal cohort studyand to study the relationship between the condition and educational and psychosocial outcomes. Methods: Analysis of data from the Avon Longitudinal Study of Parents and Children (ALSPAC) will be undertaken. ALSPAC is a longitudinal birth cohort study carried out in the UK, which has collected detailed measures of hearing on ~7000 children from the age of seven. A descriptive analysis of the data will be undertaken to estimate the prevalence of OME and hearing loss (defined as having average hearing levels > 20dB and type B tympanogram) at 7, 9, 11, and 15 years as well as that of long-term OME and hearing loss. Logistic and linear regression analyses will be conducted to examine associations between long-term OME and hearing loss and educational outcomes (grades obtained from standardised national attainment tests) and psychosocial outcomes such as anxiety, social fears, and depression at ages 10-11 and 15-16 years. Results: Results will be presented in terms of the prevalence of OME and hearing loss in the population at each age. The prevalence of long-term OME and hearing loss, defined as having OME and hearing loss at two or more time points, will also be reported. Furthermore, any associations between long-term OME and hearing loss and the educational and psychosocial outcomes will be presented. Analyses will take into account demographic factors such as sex and social deprivation and relevant confounders, including socioeconomic status, ethnicity, and IQ. Discussion: Findings from this study will provide new epidemiological information on the prevalence of long-term OME and hearing loss. The research will provide new knowledge on the impact of OME for the small group of children who do not grow out of condition by age 7 but continue to have hearing loss and need clinical care through later childhood. The study could have clinical implications and may influence service delivery for this group of children.

Keywords: educational attainment, hearing loss, otitis media with effusion, psychosocial development

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Authors: O. Elkana, O Heyman, S. Hamdan, M. Franko, J. Vatine

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Objective: To investigate whether a direct link exists between perceived pain (PP) and executive functions (EF), above and beyond the influence of depression symptoms, in the context of medical rehabilitation. Design: Cross-sectional study. Setting: Rehabilitation Hospital. Participants: 125 medical records of hospitalized patients were screened for matching to our inclusion criteria. Only 60 patients were found fit and were asked to participate. 19 decline to participate on personal basis. The 41 neurologically intact patients (mean age 46, SD 14.96) that participated in this study were in their sub-acute stage of recovery, with fluent Hebrew, with intact upper limb (to neutralize influence on psychomotor performances) and without an organic brain damage. Main Outcome Measures: EF were assessed using the Wisconsin Card Sorting Test (WCST) and the Stop-Signal Test (SST). PP was measured using 3 well-known pain questionnaires: Pain Disability Index (PDI), The Short-Form McGill Questionnaire (SF-MPQ) and the Pain Catastrophizing Scale (PCS). Perceived pain index (PPI) was calculated by the mean score composite from the 3 pain questionnaires. Depression symptoms were assessed using the Patient Health Questionnaire (PHQ-9). Results: The results indicate that irrespective of the presence of depression symptoms, PP is directly correlated with response inhibition (SST partial correlation: r=0.5; p=0.001) and mental flexibility (WSCT partial correlation: r=-0.37; p=0.021), suggesting decreased performance in EF as PP severity increases. High correlations were found between the 3 pain measurements: SF-MPQ with PDI (r=0.62, p<0.001), SF-MPQ with PCS (r=0.58, p<0.001) and PDI with PCS (r=0.38, p=0.016) and each questionnaire alone was also significantly associated with EF; thus, no specific questionnaires ‘pulled’ the results obtained by the general index (PPI). Conclusion: Examining the direct association between PP and EF, beyond the contribution of depression symptoms, provides further clinical evidence suggesting that EF and PP share underlying mediating neuronal mechanisms. Clinically, the importance of assessing patients' EF abilities as well as PP severity during rehabilitation is underscored.

Keywords: depression, executive functions, mental-flexibility, neuropsychology, pain perception, perceived pain, response inhibition

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Authors: Michael Lekan-Kehinde, Abimbola Asojo, Bonnie Sanborn

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Good acoustic performance has been identified as one of the critical Indoor Environmental Quality (IEQ) factors for student learning and development by the National Research Council. Childhood presents the opportunity for children to develop lifelong skills that will support them throughout their adult lives. Acoustic performance of a space has been identified as a factor that can impact language acquisition, concentration, information retention, and general comfort within the environment. Increasingly, students learn by communication between both teachers and fellow students, making speaking and listening crucial. Neurodiversity - while initially coined to describe individuals with autism spectrum disorder (ASD) - widely describes anyone with a different brain process. As the understanding from cognitive and neurosciences increases, the number of people identified as neurodiversity is nearly 30% of the population. This research looks at guidelines and standard for spaces with good acoustical quality and relates it with the experiences of students with autism spectrum disorder (ASD), their parents, teachers, and educators through a mixed methods approach, including selected case studies interviews, and mixed surveys. The information obtained from these sources is used to determine if selected materials, especially properties relating to sound absorption and reverberation reduction, are equally useful in small, medium sized, and large learning spaces and methodologically approaching. The results describe the potential impact of acoustics on Neurodiverse students, considering factors that determine the complexity of sound in relation to the auditory processing capabilities of ASD students. In conclusion, this research extends the knowledge of how materials selection influences the better development of acoustical environments for autism students.

Keywords: acoustics, autism spectrum disorder (ASD), children, education, learning, learning spaces, materials, neurodiversity, sound

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Authors: Lee Bih Ni, Zulfhikar Rabe, Nurul Asyikin Hassan

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The Ministry of Education Malaysia dynamically and drastically made the subject of History mandatory to be in force in 2013. This is in recognition of the nation's heritage and treasures in maintaining true facts and information for future generations of the State. History reveals the civilization of a nation and the fact of national cultural heritage. Civilization needs to be preserved as a legacy of sovereign heritage. Today's generation is the catalyst for future heirs who will support the principle and direction of the country. In line with the National Education Philosophy that aims to shape the potential development of individuals holistically and uniquely in order to produce a balanced and harmonious student in terms of intellectual, spiritual, emotional and physical. Hence, understanding the importance of studying the history subject as a pillar of identity and the history of nationhood is to be a priority in the pursuit of knowledge and empowering the spirit of statehood that is nurtured through continuous learning at school. Judging from the aspect of teacher leadership role in integrating history in a combined way based on Teacher Education Philosophy. It empowers the teaching profession towards the teacher to support noble character. It also supports progressive and scientific views. Teachers are willing to uphold the State's aspirations and celebrate the country's cultural heritage. They guarantee individual development and maintain a united, democratic, progressive and disciplined society. Teacher's role as a change and leadership agent in education begins in the classroom through formal or informal educational processes. This situation is expanded in schools, communities and countries. The focus of this paper is on the role of teacher leadership influencing the effectiveness of teaching and learning history in the classroom environment. Leadership guides to teachers' perceptions on the role of teacher leadership, teaching leadership, and the teacher leadership role and effective teacher leadership role. Discussions give emphasis on aspects of factors affecting the classroom environment, forming the classroom agenda, effective classroom implementation methods, suitable climate for historical learning and teacher challenges in implicating the effectiveness of teaching and learning processes.

Keywords: teacher leadership, leadership lessons, effective classroom, effective teacher

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Authors: Aamna Lawrence, Ashutosh Mishra

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Tremors occur in 60% of the patients who have Multiple Sclerosis (MS), the most common demyelinating disease that affects the central and peripheral nervous system, and are the primary cause of disability in young adults. While pharmacological agents provide minimal benefits, surgical interventions like Deep Brain Stimulation and Thalamotomy are riddled with dangerous complications which make non-invasive electrical stimulation an appealing treatment of choice for dealing with tremors. Hence, we hypothesized that if the non-invasive electrical stimulation parameters (mainly frequency) can be computed by mathematically modeling the nerve fibre to take into consideration the minutest details of the axon morphologies, tremors due to demyelination can be optimally alleviated. In this computational study, we have modeled the random demyelination pattern in a nerve fibre that typically manifests in MS using the High-Density Hodgkin-Huxley model with suitable modifications to account for the myelin. The internode of the nerve fibre in our model could have up to ten demyelinated regions each having random length and myelin thickness. The arrival time of action potentials traveling the demyelinated and the normally myelinated nerve fibre between two fixed points in space was noted, and its relationship with the nerve fibre radius ranging from 5µm to 12µm was analyzed. It was interesting to note that there were no overlaps between the arrival time for action potentials traversing the demyelinated and normally myelinated nerve fibres even when a single internode of the nerve fibre was demyelinated. The study gave us an opportunity to design DC pulses whose frequency of application would be a function of the random demyelination pattern to block only the delayed tremor-causing action potentials. The DC pulses could be delivered to the peripheral nervous system non-invasively by an electrode bracelet that would suppress any shakiness beyond it thus paving the way for wearable neuro-rehabilitative technologies.

Keywords: demyelination, Hodgkin-Huxley model, non-invasive electrical stimulation, tremor

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Authors: Hardisiswo Soedjana, Inne Caroline

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Deep dermal or full thickness burns are inevitably lead to post-burn contractures. These contractures remain to be one of the most concerning late complications of burn injuries. Surgical management includes releasing the contracture followed by resurfacing the defect accompanied by post-operative rehabilitation. Optimal treatment of post-burn contractures depends on the characteristics of the contractures. This study is aimed to describe clinical characteristics, problems, and management of post-burn contractures in adults and children. A retrospective analysis was conducted from medical records of patients suffered from contractures after burn injuries admitted to Hasan Sadikin general hospital between January 2016 and January 2018. A total of 50 patients with post burn contractures were included in the study. There were 17 adults and 33 children. Most patients were male, whose age range within 15-59 years old and 5-9 years old. Educational background was mostly senior high school among adults, while there was only one third of children who have entered school. Etiology of burns was predominantly flame in adults (82.3%); whereas flame and scald were the leading cause of burn injury in children (11%). Based on anatomical regions, hands were the most common affected both in adults (35.2%) and children (48.5%). Contractures were identified in 6-12 months since the initial burns. Most post-burn hand contractures were resurfaced with full-thickness skin graft (FTSG) both in adults and children. There were 11 patients who presented with recurrent contracture after previous history of contracture release. Post-operative rehabilitation was conducted for all patients; however, it is important to highlight that it is still challenging to control splinting and exercise when patients are discharged and especially the compliance in children. In order to improve quality of life in patients with history of deep burn injuries, prevention of contractures should begin right after acute care has been established. Education for the importance of splinting and exercise should be administered as comprehensible as possible for adult patients and parents of pediatric patients.

Keywords: burn, contracture, education, exercise, splinting

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Authors: Nihal Kartaltepe Behram, Göksel Ataman, Dila Okçu

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With the development of foreign direct investments, the social, cultural, political and economic interactions between countries and institutions have become visible and they have become determining factors for the strategic structuring and market goals. In this context the purpose of this study is to investigate the effects of cultural distance and institutions on foreign direct investment choices in terms of location and investment model. For international establishments, the concept of culture, as well as the concept of cultural distance, is taken specifically into consideration, especially in the selection of methods for entering the market. In the researches and empirical studies conducted, a direct relationship between cultural distance and foreign direct investments is set and institutions and effective variable factors are examined at the level of defining the investment types. When the detailed calculation strategies and empirical researches and studies are taken into consideration, the most common methods for determining the direct investment model, considering the cultural distances, are full-ownership enterprises and joint ventures. Also, when all of the factors affecting the investments are taken into consideration, it was seen that the effect of institutions such as Government Intervention, Intellectual Property Rights, Corruption and Contract Enforcements is very important. Furthermore agglomeration is more intense and effective on the investment, compared to other factors. China has been selected as the target country, due to its effectiveness in world economy and its contributions to developing countries, which has commercial relationships with. Qualitative research methods are used for this study conducted, to measure the effects of determinative variable factors in the hypotheses of study, on the direct foreign investors and to evaluate the findings. In this study in-depth interview is used as a data collection method and the data analysis is made through descriptive analysis. Foreign Direct Investments are so reactive to institutions and cultural distance is identified by all interviews and analysis. On the other hand, agglomeration is the most strong determiner factor on foreign direct investors in Chinese Market. The reason of this factors, which comprise the sectorial aggregate, are not the strongest factors as agglomeration that the most important finding. We expect that this study became a beneficial guideline for developed and developing countries and local and national institutions’ strategic plans.

Keywords: China, cultural distance, Foreign Direct Investments, institutions

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Authors: Ashimolowo Olubunmi

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Contraception use helps prevent pregnancy as well as health-related challenges, most especially among youths and girls. Our communities are bedeviled with many problems, including rape, defilement, neglect by the spouse, and intimate partner violence. Current interventions target only adults, with most facilities having youth and unfriendly adolescent services. To further support the need for this research, especially with our target beneficiaries, the partnership embarked on qualitative evidence-finding research through focus group discussions and in-depth-interview in Abeokuta and Ibadan (the capital cities of Ogun). The Focus Group Discussion (FGD) sessions were held in the state with adolescents (10-18 years) and young women (18-30 years). The result revealed that teenagers and youths who receive formal and sexual education on abstinence, and birth control methods, are likely to have healthier sexual behaviours through the promotion of abstinence and the use of condoms and other forms of contraceptives at their first intercourse, thereby protecting themselves against HIV/AIDs (Human Immunodeficiency Virus/Acquired immunodeficiency syndrome. The result further revealed that parents do not discuss issues around Adolescent and Sexual Reproductive Health (ASRH) with their adolescent girls, leading to gaps in knowledge of ASRH. Stakeholders’ involvement and trust are low. Respondents noted that there were few outreaches on ASRH and that youth-friendly adolescent centres are not common in the community. Respondents noted that there were few outreaches on ASRH organised within the community. Also, youth-friendly services were not common. There is a need to work with all stakeholders to promote those foundational life skills on pubertal changes, menstruation, and sexual life to prepare youths and girls for challenges ahead through sex education; we should work to institutionalize youth and adolescent-friendly Sexual and Reproductive Health (SRH) in our communities.

Keywords: contraception, family planning, focus group discussion, adolescents

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Authors: M. Roberts Masillamani

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There is a phenomenal difference, as regard to the teaching methodology adopted at the urban and the rural area colleges. However, bright and talented student may be from rural back ground even. But there is huge dearth of the digitization in the rural areas and lesser developed countries. Today’s students need new skills to compete and successful in the future. Education should be combination of practical, intellectual, and social skills. What does this mean for rural classrooms and how can it be achieved. Rural colleges are not able to hire the best resources, since the best teacher’s aim is to move towards the city. If city is provided everywhere, then there will be no rural area. This is possible by forming university clusters (UC). The University cluster is a group of renowned and accredited universities coming together to bridge this dearth. The UC will deliver the live lectures and allow the students’ from remote areas to actively participate in the classroom. This paper tries to present a plan of action of providing a better live classroom teaching and learning system from the city to the rural and the lesser developed countries. This paper titled “University Clusters using ICT for teaching and learning” provides a true concept of opening live digital classroom windows for rural colleges, where resources are not available, thus reducing the digital divide. This is different from pod casting a lecture or distance learning and eLearning. The live lecture can be streamed through digital equipment to another classroom. The rural students can collaborate with their peers and critiques, be assessed, collect information, acquire different techniques in assessment and learning process. This system will benefit rural students and teachers and develop socio economic status. This will also will increase the degree of confidence of the Rural students and teachers. Thus bringing about the concept of ‘Train the Trainee’ in reality. An educational university cloud for each cluster will be built remote infrastructure facilities (RIF) for the above program. The users may be informed, about the available lecture schedules, through the RIF service. RIF with an educational cloud can be set by the universities under one cluster. This paper talks a little more about University clusters and the methodology to be adopted as well as some extended features like, tutorial classes, library grids, remote laboratory login, research and development.

Keywords: lesser developed countries, digital divide, digital learning, education, e-learning, ICT, library grids, live classroom windows, RIF, rural, university clusters and urban

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Authors: Lindy Van Vliet, Saloni Phadke, Anthea Nelson, Ann Gallant

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Comprehensive and compassionate palliative care and support requires an integrated system of care that draws on formal health and social service providers working together with community and informal networks to ensure that patients and families have access to the care they need. The objective of this study is to further explore and understand the community supports, services, and informal networks that health care professionals and social service providers rely on to allow their patients to die in their homes and communities. Drawing on an interpretivist, exploratory, qualitative design, our multidisciplinary research team (medicine, nursing and social work) conducted interviews with 15 health care and social service providers in the Ottawa region. Interview data was audio-recorded, transcribed and analyzed using a reflexive thematic analysis approach. The data deepens our understandings of the facilitators and barriers that arise as health care and social service providers attempt to build networks of care for patients with life limiting illnesses and families. Three main findings emerged: First, the variability that arises due to systemic barriers in accessing and providing care; second, the exceptionally challenging workload that providers are facing as they work to address complex social care needs (housing, disability, food security), along with escalating palliative care needs; and, finally, the lack of structural support that providers and informal care networks receive. Conclusion: These findings will facilitate and build stronger person-centred/relationship-centred principles and practices between providers, patients, community, and informal care networks by highlighting the systemic barriers to accessing and providing person-centred care. Further, they will have important implications for future partnerships in integrated care delivery programs and initiatives, community policies, education programs, and provincial and national palliative care strategies.

Keywords: public health palliative care, palliative care nursing, care networks, informal care, integrated health care

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Authors: Nooraisah Katmon, Hartini Jaafar, Hazianti Abdul Halim, Jessnor Elmy Mat Jizat

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Our study empirically examines the effect of student activities on Facebook and religion on academic performance. We extend prior research in this area in a number of ways. First, given the paucity of the research in this area particularly from the Asian context, we provide the evidence from developing country like Malaysia. Second, our sample drawn from Sultan Idris Education University in Malaysia, where graduates from these universities are unique since they are expected to be able to work in both education and industry environment, and presumed to play significant roles in shaping the development of future student’s intellectual at the Malaysian secondary school and Malaysian economy in general. Third, we control for religiosity aspect when examining the association between Facebook and academic performance, something that has been predominantly neglected by the prior studies. Fourth, unlike prior studies that circulating around the Christian sphere in measuring religiosity, we provide evidence from the Islamic perspective where the act of worships and practices are much more comprehensive rather than the Christian counterparts. Fifth, we examine whether Facebook activities and religiosity are complementary or substitutive each other in improving student’s academic performance. Our sample comprise of 60 undergraduates. Our result exhibit that students with high number of friends on facebook and frequent engagement on facebook activities, such as sharing links, send message, posting photo, tagging video as well as spending long hours on facebook generally are associated with lower academic performance. Our results also reported that student’s engagement in religious activities promotes better academic performance. When we examine the potential interaction effect between facebook and religiosity, our result revealed that religiosity is effective in reducing student’s interest on facebook, hence lead to better academic achievement. In other words, religious student will be less interested in joining activities on facebook and make them more perform than their counterparts. Our findings from this study should be able to assist the university management in shaping university policies and curriculum to regulate and manage student’s activities in order to enhance overall student’s quality. Moreover, the findings from this study are also of use to the policy maker such as Malaysian Communication and Multimedia Commissions to regulate the policy on the student’s access and activities on facebook.

Keywords: facebook, religiosity, academic performance, effect of student activities

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Authors: M. Medrano, M. D. M. S., L. Younes, M. D.

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Introduction: Incidence of tibial hemimelia is 1:1,000,000. Due to pre-existing case studies and literature, there is now a better understanding of the genetics, etiology and pathoanatomy of tibial hemimelia, but an underlying cause is generally unknown. This presentation aims to discuss a rare, congenital lower limb deficiency observed in a patient in order to identify potential prenatal risk factors and future considerations for the patient’s well-being. Observation: A newborn female child, born full term via spontaneous vaginal delivery after induction of labor to unaffected and non-consanguineous parents. The prenatal course was notable for limited and disjointed prenatal care as well as maternal tobacco and marijuana use, anemia of pregnancy, and inadequate weight gain. Prenatal imaging showed lower extremity deformity with the inability to visualize tibia and bilateral clubfeet in the setting of Intrauterine Growth Restriction (IUGR). The patient presented with right equino varus deformity of the foot and right knee joint deformity. Radiological imaging showed the absence of the right tibia and varus angulation of the right foot with dislocation of the tibiotalar joint. Normal femur with lateral and mild anterior displacement of a wide fibula (Weber Type VIIa). Due to the absence of the patient’s tibia and knee extensor mechanism, the patient was not a candidate for reconstructive surgery and ultimately underwent successful right knee disarticulation. Discussion and Conclusion: By utilizing a retrospective chart review of this case, possible risk factors in prenatal care may be identified and add to existing knowledge on etiology. Hopefully, a cause can be clearly identified in the future and, thus, addressed in the prenatal period. In addition, we can investigate the patient’s well-being and adjustment post-operatively to support outpatient management of an uncommon anomaly.

Keywords: Tibial hemimelia, prenatal care, pediatric orthopedics, congenital deformity

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Authors: Sachiko Hosoya

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Objectives: The purpose of this paper is to investigate the social policy of preventive genetic medicine in Iran, by following the legalization process of abortion law and the factors affecting the process in wider Iranian contexts. In this paper, ethical discussions of prenatal diagnosis and selective abortion in Iran will be presented, by exploring Iranian social policy to control genetic diseases, especially a genetic hemoglobin disorder called Thalassemia. The ethical dilemmas in application of genetic medicine into social policy will be focused. Method: In order to examine the role of the policy for prevention of genetic diseases and selective abortion in Iran, various resources have been sutudied, not only academic articles, but also discussion in the Parliament and documents related to a court case, as well as ethnographic data on living situation of Thalassemia patients. Results: Firstly, the discussion on prenatal diagnosis and selective abortion is overviewed from the viewpoints of ethics, disability rights activists, and public policy for lower-resources countries. As a result, it should be noted that the point more important in the discussion on prenatal diagnosis and selective abortion in Iran is the allocation of medical resources. Secondly, the process of implementation of national thalassemia screening program and legalization of ‘Therapeutic Abortion Law’ is analyzed, through scrutinizing documents such as the Majlis record, government documents and related laws and regulations. Although some western academics accuse that Iranian policy of selective abortion seems to be akin to eugenic public policy, Iranian government carefully avoid to distortions of the policy as ‘eugenic’. Thirdly, as a comparative example, discussions on an Iranian court case of patient’s ‘right not to be born’ will be introduced. Along with that, restrictive living environments of people with Thalassemia patients and the carriers are depicted, to understand some disabling social factors for people with genetic diseases in the local contexts of Iran.

Keywords: abortion, Iran, prenatal diagnosis, public health ethics, Thalassemia prevention program

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