Search results for: children with intellectual disability
Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 4285

Search results for: children with intellectual disability

985 Inflammatory Cytokine (Interleukin-8): A Diagnostic Marker in Leukemia

Authors: Sandeep Pandey, Nimra Habib, Ranjana Singh, Abbas Ali Mahdi

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Leukemia is a malignancy of blood that mainly affects children and young adults; while advancement in the early diagnosis will have the potential to improve the outcome of diseases. A wide range of disease including leukemia shows inflammatory signals in their pathogenesis. In a pilot study conducted in our laboratory, 52 people were screened, of which 26 had leukemia and 26 were free from any kind of malignancy. We performed the estimation of the inflammatory cytokine Interleukin-8 and it was found significantly raised in all the leukemia patients concerning healthy volunteers who participated in the study. Flow cytometry had been performed for the confirmation of leukemia and further genomic, and proteomic, analyses of the sample revealed that IL-8 levels showed a positive correlation in patients with leukemia. The results had shown constitutive secretion of interleukin-8 by leukemia cells. So, our finding demonstrated that IL-8 is considered to have a role in the pathogenesis of leukemia, and quantification of IL-8 levels in leukemia conditions might be more useful and feasible in the clinical setting for the prediction of drug responses where it may represent a putative target for innovative diagnostic toward effective therapeutic approaches. However, further research explorations in this area are needed that include a greater number of patients with all different forms of leukemia, and estimating their IL-8 levels may hold the key for the additional predictive values on the recurrence of leukemia and its prognosis.

Keywords: T-ALL, IL-8, leukemia pathogenesis, cancer therapeutics

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984 Natural Interaction Game-Based Learning of Elasticity with Kinect

Authors: Maryam Savari, Mohamad Nizam Ayub, Ainuddin Wahid Abdul Wahab

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Game-based Learning (GBL) is an alternative that provides learners with an opportunity to experience a volatile environment in a safe and secure place. A volatile environment requires a different technique to facilitate learning and prevent injury and other hazards. Subjects involving elasticity are always considered hazardous and can cause injuries,for instance a bouncing ball. Elasticity is a topic that necessitates hands-on practicality for learners to experience the effects of elastic objects. In this paper the scope is to investigate the natural interaction between learners and elastic objects in a safe environment using GBL. During interaction, the potentials of natural contact in the process of learning were explored and gestures exhibited during the learning process were identified. GBL was developed using Kinect technology to teach elasticity to primary school children aged 7 to 12. The system detects body gestures and defines the meanings of motions exhibited during the learning process. The qualitative approach was deployed to constantly monitor the interaction between the student and the system. Based on the results, it was found that Natural Interaction GBL (Ni-GBL) is engaging for students to learn, making their learning experience more active and joyful.

Keywords: elasticity, Game-Based Learning (GBL), kinect technology, natural interaction

Procedia PDF Downloads 482
983 Intellectual Property Rights (IPR) in the Relations among Nations: Towards a Renewed Hegemony or Not

Authors: Raju K. Thadikkaran

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Introduction: The IPR have come to the centre stage of development discourse today for a variety of reasons: It ranges from the arbitrariness in the enforcement, overlapping and mismatch with various international agreements and conventions, divergence in the definition, nature and content and the duration as well as severe adverse consequences to technologically weak developing countries. In turn, the IPR have acquired prominence in the foreign policy making as well as in the relations among nations. Quite naturally, there is ample scope for an examination of the correlation between Technology, IPR and International Relations in the contemporary world. Nature and Scope: A cursory examination of the realm of IPR and its protection shall reveals the acute divergence that exists in the perspectives, on all matters related to the very definition, nature, content, scope and duration. The proponents of stronger protection, mostly technologically advanced countries, insist on a stringent IP Regime whereas technologically weak developing countries seem to advocate for flexibilities. From the perspective of developing countries like India, one of the most crucial concerns is related to the patenting of life forms and the protection of TK and BD. There have been several instances of Bio-piracy and Bio-prospecting of the resources related to BD and TK from the Bio-rich Global South. It is widely argued that many provisions in the TRIPS are capable of offsetting the welcome provisions in the CBD such as the Access and Benefit Sharing and Prior Informed Consent. The point that is being argued out is as to how the mismatch between the provisions in the TRIPS Agreement and the CBD could be addressed in a healthy manner so that the essential minimum legitimate interests of all stakeholders could be secured thereby introducing a new direction to the international relations. The findings of this study reveal that the challenges roused by the TRIPS Regime over-weigh the opportunities. The mismatch in the provisions in this regard has generated various crucial issues such as Bio-piracy and Bio-prospecting. However, there is ample scope for managing and protecting IP through institutional innovation, legislative, executive and administrative initiative at the global, national and regional levels. The Indian experience is quite reflective of the same and efforts are being made through the new national IPR policy. This paper, employing Historical Analytical Method, has Three Sections. The First Section shall trace the correlation between the Technology, IPR and international relations. The Second Section shall review the issues and potential concerns in the protection and management of IP related to the BD and TK in the developing countries in the wake of the TRIPS and the CBD. The Final Section shall analyze the Indian Experience in this regard and the experience of the bio-rich Kerala in particular.

Keywords: IPR, technology and international relations, bio-diversity, traditional knowledge

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982 Clinical Outcomes of Neonates Born to COVID-19 Positive Mothers in a Tertiary Level Private Hospital

Authors: Patricia Abigail B. Miranda, Imelda A. Luna

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Introduction: COVID-19 infection is a novel viral illness that began as a local epidemic in December 2019 in Wuhan, China which quickly emerged into a pandemic by February 2020. The virus causes a spectrum of signs and symptoms, ranging from mild upper respiratory symptoms to acute respiratory distress syndrome, which may lead to death. Among children and neonates, those afflicted with the disease may present asymptomatically or with mild symptoms. To date, there has been limited local data that describes the outcomes of the growing number of COVID-19 cases, specifically in neonates. Methods: A cross-sectional study was conducted to determine the outcomes of neonates born to COVID-19 Positive Mothers from March 2020 until June 2022. The prevalence of COVID-19 among these neonates was also determined. Results: COVID-positive prevalence after 24 hours of life is at 8%, while prevalence after 48 hours among those who still underwent testing was at 13.51%. Moreover, among those COVID-19-negative neonates who had symptoms, they mostly presented with tachypnea (5.7%). The prevalence of complications among COVID-19-negative neonates delivered to COVID-19-positive mothers is 22.7%. Conclusion: Neonates born to COVID-19-positive mothers who yielded positive COVID-19 results are generally asymptomatic. Moreover, there are no associated mortalities among those who yielded positive results.

Keywords: COVID-19, neonates, outcomes, clinical profile

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981 Stimulating Effects of Media in Improving Quality of Distance Education: A Literature Based Study

Authors: Tahzeeb Mahreen

Abstract:

Distance education refers to giving instruction in which students are remote from the institution and once in a while go to formal demonstration classes, and teaching sessions. Segments of media, for example, radio, TV, PC and Internet and so on are the assets and method for correspondence being utilized as a part of learning material by many open and distance learning institutions. Media has a great part in maximizing the learning opportunities thus enabling distance education, a mode of increased literacy rate of the country. This study goes for analyzing how media had affected distance education through its different mediums. The objectives of the study were (i) to determine the direct impact of media on distance education? (ii) To know how media effects distance education pedagogy (iii) To find out how media works to increase student’s achievement. Literature-based methodology was used, and books, peer-reviewed articles, press reports and internet-based materials were studied as a result. By using descriptive qualitative research analysis, the researcher has interpreted that distance education programs are progressively utilizing mixes of media to convey training that has a positive impact on learning along with a few challenges. In addition, the perception of the researcher varied depending on the programs of distance learning but generally believed that electronic media were moderately more supportive in enhancing the overall performance of the learners. It was concluded that the intellectual style, identity qualities, and self-expectations are the three primary enhanced areas in a student’s educational life in distance education programs. It was portrayed that a comprehension of how individual learners approach learning may make it workable for the distance educator to see an example of learning styles and arrange or modify course presentations through media. Moreover, it is noticed that teaching in distance education address the developing role of the instructor, the requirement for diminishing resistance as conventional teachers utilize remove conveyance frameworks lastly, staff state of mind toward the utilization of innovation. Furthermore, the results showed that media had assumed its part to make distance learning educators more dynamic, capable and concerned about their individual works. The study also indicated a high positive relationship between the media available at study centers and media used by the distance education. The challenge pointed out by the researcher was the clash of distance and time with communication as the life situations of every learner are varied. Recommendations included the realization of the duty of distance learning instructor to help students understand the effective use of media for their study lessons and also to develop online learning communities to be in instant connection with the students.

Keywords: distance education, education, media, teaching and learning

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980 Measure of Pleasure of Drug Users

Authors: Vano Tsertsvadze, Marina Chavchanidze, Lali Khurtsia

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Problem of drug use is often seen as a combination of psychological and social problems, but this problem can be considered as economically rational decision in the process of buying pleasure (looking after children, reading, harvesting fruits in the fall, sex, eating, etc.). Before the adoption of the decisions people face to a trade-off - when someone chooses a delicious meal, she takes a completely rational decision, that the pleasure of eating has a lot more value than the pleasure which she will experience after two months diet on the summer beach showing off her beautiful body. This argument is also true for alcohol, drugs and cigarettes. Smoking has a negative effect on health, but smokers are not afraid of the threat of a lung cancer after 40 years, more valuable moment is a pleasure from smoking. Our hypothesis - unsatisfied pleasure and frustration, probably determines the risk of dependence on drug abuse. The purpose of research: 1- to determine the relative measure unit of pleasure, which will be used to measure and assess the intensity of various human pleasures. 2- to compare the intensity of the pleasure from different kinds of activity, with pleasures received from drug use. 3- Based on the analysis of data, to identify factors affecting the rational decision making. Research method: Respondents will be asked to recall the greatest pleasure of their life, which will be used as a measure of the other pleasures. The study will use focus groups and structured interviews.

Keywords: drug, drug-user, measurement, satisfaction

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979 Predictors of Korean Women’s Attitudes toward Family Formation and the Intrahousehold Division of Labor

Authors: Damla Tas, Robert Rudolf

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Fast economic development and women empowerment in Korea have contributed to an unprecedented family and gender crisis, with Korean fertility rates at a global record low. This study explores the predictors and time trends of Korean women’s attitudes toward family formation and the household division of labor by using the Korean Longitudinal Survey of Women and Families from 2007 to 2018. Results indicate that education, age, marital status, and motherhood are significantly associated with women’s attitudes toward family formation and gender attitudes toward the intrahousehold division of labor. In addition, more educated women and those aged 26 to 45 are less likely to support traditional marriage and traditional household division of labor statements. Unmarried and divorced women are more likely to support progressive values and roles. Also, retrospective factors such as mothers’ schooling and parents’ relationship are significantly associated with gender role ideology. Our findings also indicate a downward trend in the number of Korean women stating one must have children. The study suggests that Korean families and society need to adjust to women’s changing preferences concerning their societal roles toward less traditional. Hence, a new agreement between men and women is needed on how work can be divided more equally.

Keywords: marriage, family formation, intrahousehold division of labor, gender role attitudes, Korea

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978 An Investigation into the Levels of Human Development, Contraceptives’ Usage and Maternal Health in Indian States

Authors: Divyanshi Singh

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Women’s right to have choices, sense of self-worth and their right to have access to opportunities have been a subject of serious concern. The health of women and their children in Indian society is adversely affected by the woman’s inferior status within households. The level of human development in society is a reflection of the better status of a woman, which has a clear impact on the usage of contraceptive methods and maternal health. The study is an attempt to assess the performance of Indian states on the parameters of levels of development and to see how the developmental trajectory is influencing the choice for contraception and maternal health. The objective of the paper is to study the relationship between usage of contraception, maternal health and levels of human development in Indian states. Data from NFHS-4th round, AHS (2012-13) and census 2011 is used. Three indicators of human development (effective literacy, infant mortality and gross district domestic product) have been taken. Maternal health for the study has been measured in MMR, IMR and pregnancy resulted in abortions, stillbirths and miscarriage. The multiple regression analysis has been done to analyze the relationship between them. The Developmental factor is found to be greatly influencing the choice of family planning and thus they both show strong relation with maternal health.

Keywords: human development, contraceptive usage, maternal health, effective literacy

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977 Application of Single Subject Experimental Designs in Adapted Physical Activity Research: A Descriptive Analysis

Authors: Jiabei Zhang, Ying Qi

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The purpose of this study was to develop a descriptive profile of the adapted physical activity research using single subject experimental designs. All research articles using single subject experimental designs published in the journal of Adapted Physical Activity Quarterly from 1984 to 2013 were employed as the data source. Each of the articles was coded in a subcategory of seven categories: (a) the size of sample; (b) the age of participants; (c) the type of disabilities; (d) the type of data analysis; (e) the type of designs, (f) the independent variable, and (g) the dependent variable. Frequencies, percentages, and trend inspection were used to analyze the data and develop a profile. The profile developed characterizes a small portion of research articles used single subject designs, in which most researchers used a small sample size, recruited children as subjects, emphasized learning and behavior impairments, selected visual inspection with descriptive statistics, preferred a multiple baseline design, focused on effects of therapy, inclusion, and strategy, and measured desired behaviors more often, with a decreasing trend over years.

Keywords: adapted physical activity research, single subject experimental designs, physical education, sport science

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976 Iranian Sexual Health Needs in Viewpoint of Policy Makers: A Qualitative Study

Authors: Mahnaz Motamedi, Mohammad Shahbazi, Shahrzad Rahimi-Naghani, Mehrdad Salehi

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Introduction: Identifying sexual health needs, developing appropriate plans, and delivering services to meet those needs is an essential component of health programs for women, men, and children all over the world, especially in poor countries. Main Subject: The aim of this study was to describe the needs of sexual health from the viewpoint of health policymakers in Iran. Methods: A qualitative study using thematic content analysis was designed and conducted. Data gathering was conducted through semi-structured, in-depth interviews with 25 key informants within the healthcare system. Key informants were selected through both purposive and snowball sampling. MAXQUDA software (version 10) was used to facilitate transcription, classification of codes, and conversion of data into meaningful units, by the process of reduction and compression. Results: The analysis of narratives and information categorized sexual health needs into five categories: culturalization of sexual health discourse, sexual health care services, sexual health educational needs, sexual health research needs, and organizational needs. Conclusion: Identifying and explaining sexual health needs is an important factor in determining the priority of sexual health programs and identification of barriers to meet these needs. This can help other policymakers and health planners to develop appropriate programs to promote sexual and reproductive health.

Keywords: sexual health, sexual health needs, policy makers, health system, qualitative study

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975 Efficacy of Opicapone and Levodopa with Different Levodopa Daily Doses in Parkinson’s Disease Patients with Early Motor Fluctuations: Findings from the Korean ADOPTION Study

Authors: Jee-Young Lee, Joaquim J. Ferreira, Hyeo-il Ma, José-Francisco Rocha, Beomseok Jeon

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The effective management of wearing-off is a key driver of medication changes for patients with Parkinson’s disease (PD) treated with levodopa (L-DOPA). While L-DOPA is well tolerated and efficacious, its clinical utility over time is often limited by the development of complications such as dyskinesia. Still, common first-line option includes adjusting the daily L-DOPA dose followed by adjunctive therapies usually counting for the L-DOPA equivalent daily dose (LEDD). The LEDD conversion formulae are a tool used to compare the equivalence of anti-PD medications. The aim of this work is to compare the effects of opicapone (OPC) 50 mg, a catechol-O-methyltransferase (COMT) inhibitor, and an additional 100 mg dose of L-DOPA in reducing the off time in PD patients with early motor fluctuations receiving different daily L-DOPA doses. OPC was found to be well tolerated and efficacious in advanced PD population. This work utilized patients' home diary data from a 4-week Phase 2 pharmacokinetics clinical study. The Korean ADOPTION study randomized (1:1) patients with PD and early motor fluctuations treated with up to 600 mg of L-DOPA given 3–4 times daily. The main endpoint was change from baseline in off time in the subgroup of patients receiving 300–400 mg/day L-DOPA at baseline plus OPC 50 mg and in the subgroup receiving >300 mg/day L-DOPA at baseline plus an additional dose of L-DOPA 100 mg. Of the 86 patients included in this subgroup analysis, 39 received OPC 50 mg and 47 L-DOPA 100 mg. At baseline, both L-DOPA total daily dose and LEDD were lower in the L-DOPA 300–400 mg/day plus OPC 50 mg group than in the L-DOPA >300 mg/day plus L-DOPA 100 mg. However, at Week 4, LEDD was similar between the two groups. The mean (±standard error) reduction in off time was approximately three-fold greater for the OPC 50 mg than for the L-DOPA 100 mg group, being -63.0 (14.6) minutes for patients treated with L-DOPA 300–400 mg/day plus OPC 50 mg, and -22.1 (9.3) minutes for those receiving L-DOPA >300 mg/day plus L-DOPA 100 mg. In conclusion, despite similar LEDD, OPC demonstrated a significantly greater reduction in off time when compared to an additional 100 mg L-DOPA dose. The effect of OPC appears to be LEDD independent, suggesting that caution should be exercised when employing LEDD to guide treatment decisions as this does not take into account the timing of each dose, onset, duration of therapeutic effect and individual responsiveness. Additionally, OPC could be used for keeping the L-DOPA dose as low as possible for as long as possible to avoid the development of motor complications which are a significant source of disability.

Keywords: opicapone, levodopa, pharmacokinetics, off-time

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974 The Historical Perspectives of Peace Education as a Vehicle of Unity and Technological Developments in Nigeria

Authors: Oluwole Enoch Adeniran

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Peace studies and conflict resolution; though a relatively new discipline had attracted scholars from far and near. It had enhanced a purposeful training of mind of young adult among other categories of learners. It provides a platform through which university under-graduates and post-graduates students are exposed to the rudiments of peace building, peacemaking and peace keeping towards a successful conflict resolution. The paper historicizes peace education as most desirable in any human society that desired development. It aims at educating children and young adults in the dynamics of peaceful conflicts resolution at home, in school and communities (states) throughout the world for a purposeful technological development. It also aims at exposing students to the nature of conflict and how to manage and resolve conflicts in order to promote national unity for meaningful development. The paper argues that, for a state to record any meaningful socio-economic, political and technological development; a conducive and peaceful atmosphere must be put in place. This theoretical paper emerged in the context of historical specificities of conflict resolution from a general conceptual framework. It then concludes with suggestions on the modes of conflict prevention, conflict management and conflict resolution for an ideal technologically advanced society.

Keywords: history, education, peace, unity, technology and development

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973 Transmission of Food Wisdom for Salaya Community

Authors: Supranee Wattanasin

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The objectives of this research are to find and collect the knowledge in order to transmit the food wisdom of Salaya community. The research is qualitative tool to gather the data. Phase 1: Collect and analyze related literature review on food wisdom including documents about Salaya community to have a clear picture on Salaya community context. Phase 2: Conduct an action research, stage a people forum to exchange knowledge in food wisdom of Salaya community. Learning stage on cooking, types, and benefits of the food wisdom of Salaya community were also set up, as well as a people forum to find ways to transmit and add value to the food wisdom of Salaya community. The result shows that Salaya old market community was once a marketplace located by Mahasawat canal. The old market had become sluggish due to growing development of land transportation. This had affected the ways of food consumption. Residents in the community chose 3 menus that represent the community’s unique food: chicken green curry, desserts in syrup and Khanom Sai-Sai (steamed flour with coconut filling). The researcher had the local residents train the team on how to make these meals. It was found that people in the community transmit the wisdom to the next generation by teaching and telling from parents to children. ‘Learning through the back door’ is one of the learning methods that the community used and still does.

Keywords: transmission, food wisdom, Salaya, cooking

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972 Post COVID-19 Pandemic Determinants of Depression and Anxiety Among the Moroccan Population

Authors: Kaoutar Chbihi, Aziza Menouni, Imane Berni, Tarik Abchouch, Samir El Jaafari

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The unpredictability and ambiguity of a pandemic, combined with the economic impact, sedentary lifestyle, and increased living cost, have the potential to seriously raise the risk of mental health issues among the population. Therefore, this study had the aim to assess the magnitude of mental health outcomes and risk factors among the general population in Morocco in times of the Covid-19 pandemic. This study consisted of a cross-sectional design and was survey-based and region-stratified by collecting demographic data and mental health measurements from 523 participants. The degree of depression, anxiety, and insomnia symptoms were assessed by using the 9-item Patient Health Questionnaire and the 7-items Generalized Anxiety Disorder. The survey was completed by 523 individuals. Results showed that 67.9% were women, and 58.6% were aged 18-30 years. 49% of participants reported depression issues, while 39.8% experienced anxiety. Being a married woman with children was associated with severe symptoms of depression and anxiety. Finally, our findings reported a significant mental health burden among the general population of Morocco, which needs to be tackled by specific co-created interventions and adapted strategies in order to prevent impacts on public health.

Keywords: anxiety, COVID-19, depression, mental health, Morocco, pandemic

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971 Relationship Between Body Composition and Physical Fitness of Primary School Learners From a Pre-Dominantly Rural Province in South Africa

Authors: Howard Gomwe, Eunice Seekoe

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There is arguably dearth of literature regarding body physical fitness and body composition amongst primary schools in South Africa. For this reason, the study is aimed at investigating and accessing how body composition relates to physical fitness amongst learners between 9 – 14 years of age in the Eastern Cape Province of South Africa. In order to achieve this, a school-based cross-sectional survey was carried out among 876 primary school learners aged 9 to14 years. Body composition indicators were measured and/or calculated, whilst physical fitness was evaluated by a 20 m shuttle run, push-ups, sit and reach as well as sit-ups, according to the EUROFIT fitness standards. Out of 876 participants, a total of 870 were retained. Of these, 351 (40.34%) were boys and 519 (59.66%) were girls. The average age of learners was 11.04 ± 1.50 years, with boys having a importantly (p = 0.002) higher average age (M = 11.24; SD = 1.51 years) as compared to that of girls (M = 10.91; SD = 1.48 years). The non-parametric Spearman Rho correlation coefficients revealed several significant and negative relationships between body composition measurements with physical fitness characteristics, which were stronger in girls than in boys. The findings advocate for policy makers and responsible authorities to initiate the development of policies and interventions targeted at encouraging physical activity and healthy promotion among primary school learners in South Africa, especially in girls.

Keywords: BMI, body composition, physical fitness, children

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970 Teachers' Preferences on the Issue of Segregation of Gifted Pupils in Czech Educational System

Authors: I. Kočvarová, E. Machů, N. Bártlová

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The issue of inclusion - segregation in the current Czech educational system is highly actual due to changes in legislation. It applies primarily to pupils with special educational needs, but it should also apply to pupils with giftedness. The paper presents chosen results of an exploratory survey that was carried out on a convenience sample of 1101 Czech teachers working in lower secondary education (ISCED2). The rate of teachers´ agreement with segregation of gifted pupils in the education system was monitored during this investigation. A validated questionnaire of our own design was used for the purpose of this investigation. The results were compared across groups of teachers in terms of selected variables. Results show that 36,3 % of teachers incline to segregation (rather than inclusion) of gifted pupils. Teachers who are not educated in this field and have no experience in teaching gifted pupils tend to support their segregation more in comparison with other teachers. Teachers of specialized schools for gifted pupils paradoxically agree with segregation to a slightly lesser extent than teachers from traditional schools, but they also manifest the most hesitant attitude in this issue. Preferences for segregation of gifted pupils are not related to attitudes toward gifted pupils or teachers' self-evaluation in terms of care for the gifted. Investigation indicates that the issue of education of gifted children and their inclusion in the educational system needs more space within the further education of teachers.

Keywords: educational system, evaluation, gifted pupil, inclusion, segregation, teacher

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969 Using Storytelling Tasks to Enhance Language Acquisition in Young Learners

Authors: Sinan Serkan Çağlı

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This study explores the effectiveness of incorporating storytelling tasks into language acquisition programs for young learners. The research investigates how storytelling, as a pedagogical tool, can contribute to the enhancement of language acquisition skills in children. Drawing upon relevant literature and empirical data, this article examines the impact of storytelling on vocabulary development, comprehension, and overall language proficiency in early childhood education in Turkey. The study adopts a qualitative approach, including classroom observations and interviews with teachers and students. Findings suggest that storytelling tasks not only foster linguistic competence but also stimulate cognitive and socio-emotional development in young learners. Additionally, the article explores various storytelling techniques and strategies suitable for different age groups. It is evident that integrating storytelling tasks into language learning environments can create engaging and effective opportunities for young learners to acquire language skills in a natural and enjoyable way. This research contributes valuable insights into the pedagogical practices that promote language acquisition in early childhood, emphasizing the significance of storytelling as a powerful educational tool, especially in Turkey for EFL students.

Keywords: storytelling, language acquisition, young learners, early childhood education, pedagogy, language proficiency

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968 Young People and Their Parents Accessing Their Digital Health Data via a Patient Portal: The Ethical and Legal Implications

Authors: Pippa Sipanoun, Jo Wray, Kate Oulton, Faith Gibson

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Background: With rapidly evolving digital health innovation, there is a need for digital health transformation that is accessible and sustainable, that demonstrates utility for all stakeholders while maintaining data safety. Great Ormond Street Hospital for Children aimed to future-proof the hospital by transitioning to an electronic patient record (EPR) system with a tethered patient portal (MyGOSH) in April 2019. MyGOSH patient portal enables patients 12 years or older (with their parent's consent) to access their digital health data. This includes access to results, documentation, and appointments that facilitate communication with their care team. As part of the Going Digital Study conducted between 2018-2021, data were collected from a sample of all relevant stakeholders before and after EPR and MyGOSH implementation. Data collection reach was wide and included the hospital legal and ethics teams. Aims: This study aims to understand the ethical and legal implications of young people and their parents accessing their digital health data. Methods: A focus group was conducted. Recruited participants were members of the Great Ormond Street Hospital Paediatric Bioethics Centre. Participants included expert and lay members from the Committee from a variety of professional or academic disciplines. Written informed consent was provided by all participants (n=7). The focus group was recorded, transcribed verbatim, and analyzed using thematic analysis. Results: Six themes were identified: access, competence and capacity - granting access to the system; inequalities in access resulting in inequities; burden, uncertainty and responding to change - managing expectations; documenting, risks and data safety; engagement, empowerment and understanding – how to use and manage personal information; legal considerations and obligations. Discussion: If healthcare professionals are to empower young people to be more engaged in their care, the importance of including them in decisions about their health is paramount, especially when they are approaching the age of becoming the consenter for treatment. Complexities exist in assessing competence or capacity when granting system access, when disclosing sensitive information, and maintaining confidentiality. Difficulties are also present in managing clinician burden, managing user expectations whilst providing an equitable service, and data management that meets professional and legal requirements. Conclusion: EPR and tethered-portal implementation at Great Ormond Street Hospital for Children was not only timely, due to the need for a rapid transition to remote consultations during the COVID-19 pandemic, which would not have been possible had EPR/MyGOSH not been implemented, but also integral to the digital health revolution required in healthcare today. This study is highly relevant in understanding the complexities around young people and their parents accessing their digital health data and, although the focus of this research related to portal use and access, the findings translate to young people in the wider digital health context. Ongoing support is required for all relevant stakeholders following MyGOSH patient portal implementation to navigate the ethical and legal complexities. Continued commitment is needed to balance the benefits and burdens, promote inclusion and equity, and ensure portal utility for patient benefit, whilst maintaining an individualized approach to care.

Keywords: patient portal, young people and their parents, ethical, legal

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967 Online Delivery Approaches of Post Secondary Virtual Inclusive Media Education

Authors: Margot Whitfield, Andrea Ducent, Marie Catherine Rombaut, Katia Iassinovskaia, Deborah Fels

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Learning how to create inclusive media, such as closed captioning (CC) and audio description (AD), in North America is restricted to the private sector, proprietary company-based training. We are delivering (through synchronous and asynchronous online learning) the first Canadian post-secondary, practice-based continuing education course package in inclusive media for broadcast production and processes. Despite the prevalence of CC and AD taught within the field of translation studies in Europe, North America has no comparable field of study. This novel approach to audio visual translation (AVT) education develops evidence-based methodology innovations, stemming from user study research with blind/low vision and Deaf/hard of hearing audiences for television and theatre, undertaken at Ryerson University. Knowledge outcomes from the courses include a) Understanding how CC/AD fit within disability/regulatory frameworks in Canada. b) Knowledge of how CC/AD could be employed in the initial stages of production development within broadcasting. c) Writing and/or speaking techniques designed for media. d) Hands-on practice in captioning re-speaking techniques and open source technologies, or in AD techniques. e) Understanding of audio production technologies and editing techniques. The case study of the curriculum development and deployment, involving first-time online course delivery from academic and practitioner-based instructors in introductory Captioning and Audio Description courses (CDIM 101 and 102), will compare two different instructors' approaches to learning design, including the ratio of synchronous and asynchronous classroom time and technological engagement tools on meeting software platform such as breakout rooms and polling. Student reception of these two different approaches will be analysed using qualitative thematic and quantitative survey analysis. Thus far, anecdotal conversations with students suggests that they prefer synchronous compared with asynchronous learning within our hands-on online course delivery method.

Keywords: inclusive media theory, broadcasting practices, AVT post secondary education, respeaking, audio description, learning design, virtual education

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966 Positive Thinking Reexamined: The Reality of the Role of Negativity & Emotions in the Pursuit of Goals

Authors: Lindsay Foreman

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Introduction: Goals have become synonymous with the quest for the good life and the pursuit of happiness, with coaching and positive psychology gaining popularity as an approach in recent decades. And yet mental health is on the rise and the leading cause of disability, wellbeing is on the decline, stress is leading to 50-60% of workday absences and the need for action is indisputable and urgent. Purpose: The purpose of this study is to better understand two things we cannot see, but that play the most significant role in these outcomes - what we think and how we feel. With many working on the assumption that positive thinking and an optimistic outlook are necessary or valuable components of goal pursuit, this study uncovers the reality of the ‘inner-game’ from the coachees perspective. Method: With a mixed methods design using a Q Method study of subjectivity to ‘make the unseen seen’. First, a wide-ranging universe of subjective thoughts and feelings experienced during goal pursuit are explored.. These are generated from literature and a Qualtrics survey to create a Q-Set of 40 statements. Then 19 participants in professional and organisational settings offer their perspectives on these 40 Q-Set statements. Each rank them in a semi-forced distribution from ‘most like me’ to ‘least like me’ using Q-Sort software. From these individual perspectives, clusters of perspectives are identified using factor analysis and four distinct viewpoints, have emerged. Findings: These Goal Pursuit Viewpoints offer insight into the states and self-talk experienced by coachees and may not reflect the assumption of positive thinking associated with achieving goals. The four Viewpoints are 1) the Positive View, 2) the Realistic View 3) The Dreamer View and 4) The Conflicted View. With only a quarter of the Dreamer View, and a third of the Positive view going on to achieve their goals, these assumptions need review. And with all the Realistic View going on to achieve their goals, the role of self-doubt, overwhelm and anxiousness in goal achievement cannot be overlooked. Contribution: This study offers greater insight and understanding of people's inner experiences as they pursue goals and highlights the necessary and normal negative states associated with goal achievement. It also offers a practical tool of 40 ‘Clarity Card’ Q-set statements to help coaches and coachees explore the current state and help navigate the journey towards goal achievement. It calls into question whether goals should always be part of coaching, and if values, identity, and purpose may play a greater role than goals

Keywords: self-talk, mental health, inner critic, inner coach

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965 Increasing Access to Upper Limb Reconstruction in Cervical Spinal Cord Injury

Authors: Michelle Jennett, Jana Dengler, Maytal Perlman

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Background: Cervical spinal cord injury (SCI) is a devastating event that results in upper limb paralysis, loss of independence, and disability. People living with cervical SCI have identified improvement of upper limb function as a top priority. Nerve and tendon transfer surgery has successfully restored upper limb function in cervical SCI but is not universally used or available to all eligible individuals. This exploratory mixed-methods study used an implementation science approach to better understand these factors that influence access to upper limb reconstruction in the Canadian context and design an intervention to increase access to care. Methods: Data from the Canadian Institute for Health Information’s Discharge Abstracts Database (CIHI-DAD) and the National Ambulatory Care Reporting System (NACRS) were used to determine the annual rate of nerve transfer and tendon transfer surgeries performed in cervical SCI in Canada over the last 15 years. Semi-structured interviews informed by the consolidated framework for implementation research (CFIR) were used to explore Ontario healthcare provider knowledge and practices around upper limb reconstruction. An inductive, iterative constant comparative process involving descriptive and interpretive analyses was used to identify themes that emerged from the data. Results: Healthcare providers (n = 10 upper extremity surgeons, n = 10 SCI physiatrists, n = 12 physical and occupational therapists working with individuals with SCI) were interviewed about their knowledge and perceptions of upper limb reconstruction and their current practices and discussions around upper limb reconstruction. Data analysis is currently underway and will be presented. Regional variation in rates of upper limb reconstruction and trends over time are also currently being analyzed. Conclusions: Utilization of nerve and tendon transfer surgery to improve upper limb reconstruction in Canada remains low. There are a complex array of interrelated individual-, provider- and system-level barriers that prevent individuals with cervical SCI from accessing upper limb reconstruction. In order to offer equitable access to care, a multi-modal approach addressing current barriers is required.

Keywords: cervical spinal cord injury, nerve and tendon transfer surgery, spinal cord injury, upper extremity reconstruction

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964 Innovations in the Implementation of Preventive Strategies and Measuring Their Effectiveness Towards the Prevention of Harmful Incidents to People with Mental Disabilities who Receive Home and Community Based Services

Authors: Carlos V. Gonzalez

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Background: Providers of in-home and community based services strive for the elimination of preventable harm to the people under their care as well as to the employees who support them. Traditional models of safety and protection from harm have assumed that the absence of incidents of harm is a good indicator of safe practices. However, this model creates an illusion of safety that is easily shaken by sudden and inadvertent harmful events. As an alternative, we have developed and implemented an evidence-based resilient model of safety known as C.O.P.E. (Caring, Observing, Predicting and Evaluating). Within this model, safety is not defined by the absence of harmful incidents, but by the presence of continuous monitoring, anticipation, learning, and rapid response to events that may lead to harm. Objective: The objective was to evaluate the effectiveness of the C.O.P.E. model for the reduction of harm to individuals with mental disabilities who receive home and community based services. Methods: Over the course of 2 years we counted the number of incidents of harm and near misses. We trained employees on strategies to eliminate incidents before they fully escalated. We trained employees to track different levels of patient status within a scale from 0 to 10. Additionally, we provided direct support professionals and supervisors with customized smart phone applications to track and notify the team of changes in that status every 30 minutes. Finally, the information that we collected was saved in a private computer network that analyzes and graphs the outcome of each incident. Result and conclusions: The use of the COPE model resulted in: A reduction in incidents of harm. A reduction the use of restraints and other physical interventions. An increase in Direct Support Professional’s ability to detect and respond to health problems. Improvement in employee alertness by decreasing sleeping on duty. Improvement in caring and positive interaction between Direct Support Professionals and the person who is supported. Developing a method to globally measure and assess the effectiveness of prevention from harm plans. Future applications of the COPE model for the reduction of harm to people who receive home and community based services are discussed.

Keywords: harm, patients, resilience, safety, mental illness, disability

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963 Cyber Security Situational Awareness among Students: A Case Study in Malaysia

Authors: Yunos Zahri, Ab Hamid R. Susanty, Ahmad Mustaffa

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This paper explores the need for a national baseline study on understanding the level of cyber security situational awareness among primary and secondary school students in Malaysia. The online survey method was deployed to administer the data collection exercise. The target groups were divided into three categories: Group 1 (primary school aged 7-9 years old), Group 2 (primary school aged 10-12 years old), and Group 3 (secondary school aged 13-17 years old). A different questionnaire set was designed for each group. The survey topics/areas included Internet and digital citizenship knowledge. Respondents were randomly selected from rural and urban areas throughout all 14 states in Malaysia. A total of 9,158 respondents participated in the survey, with most states meeting the minimum sample size requirement to represent the country’s demographics. The findings and recommendations from this baseline study are fundamental to develop teaching modules required for children to understand the security risks and threats associated with the Internet throughout their years in school. Early exposure and education will help ensure healthy cyber habits among millennials in Malaysia.

Keywords: cyber security awareness, cyber security education, cyber security, school students

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962 Minors and Terrorism: A Discussion about the Recruitment and Resilience

Authors: Marta Maria Aguilar Carceles

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This theoretical study argues how terrorism is rising around the world and which are the factors and situations that contribute to this process. Linked to aspects of human development, minors are one of the most vulnerable collectives to be engaged for this purpose. Its special weakness and lower possibility of self-defense makes them more likely to become victims as a result of a brainwashing process. Terrorism is an illicit way to achieve political and social changes and new technologies and available resources make it easier to spread. In this sense, throughout a theoretical revision of different recent and scientific articles, it is evaluated which risk factors can provoke its affiliation and later develop of antisocial and illicit behavior. An example of this group of factors could be the inter-generational continuity between parents and their children, as well as the sociodemographic aspects joined to cultural experiences (i.e. sense of dishonor, frustration, etc.). The assess of this kind of variables must be accompanied by the evaluation of protective factors, because the reasons through one person decides to join to terrorism are inherently idiosyncratic and we can only install mechanisms of prevention knowing those personal characteristics. To sum, both aspects underline the relevance of the internalizing and externalizing personal factors, each of them in one specific direction: a) to increase the possibility of being recruited or follow this type of criminal group by himself, and b) to be able of avoiding the effects and consequences of terrorism thanks to personal and resilient characteristics (resilience).

Keywords: criminality, minors, recruitment, resilience, terrorism

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961 Inherited Intergenerational Trauma – The Society for Black People in South Central Los Angeles

Authors: Kevin R. Collins Sr.

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In South Central Los Angeles, Black people have endured various forms of trauma that spans across generations. This includes the horrors of slavery and the aftermaths of the Jim Crow Laws, institutionalized racism, and legislative segregation, just to name a few. The individuals born from the 1900’s until today have continued to transmit the traumas experienced across generations. Parents unconsciously transmit the hidden trauma, and the children take these experiences and apply it to the society they live in. Although there are some who attempt to break the cycle of transmitted trauma, the remninsce still remain and play a huge role in how they interact with others. The attempt of this discussion is to bring these traumatic experiences to the surface and attack them head on. It is important that we do this to allow not only the suffering individuals but the suffering society to heal. As a society, looking at the humane side of it and attempting to stop the racial injustice placed on black people to relieve them of the stress that some. If not all,, endure in this great United States of America. Changing the behavior as a country to create an improved since of common unity within. If we solve our own racial and social issues within this country, maybe we can solve these same issues that have been the footstool to the many wars we see around the world. Thus, breaking the cycle of inherited intergenerational trauma.

Keywords: intergenerational trauma, inherited trauma, transmission of trauma, blacks in South central LA, black trauma in America

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960 Creatine Associated with Resistance Training Increases Muscle Mass in the Elderly

Authors: Camila Lemos Pinto, Juliana Alves Carneiro, Patrícia Borges Botelho, João Felipe Mota

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Sarcopenia, a syndrome characterized by progressive and generalized loss of skeletal muscle mass and strength, currently affects over 50 million people and increases the risk of adverse outcomes such as physical disability, poor quality of life and death. The aim of this study was to examine the efficacy of creatine supplementation associated with resistance training on muscle mass in the elderly. A 12-week, double blind, randomized, parallel group, placebo controlled trial was conducted. Participants were randomly allocated into one of the following groups: placebo with resistance training (PL+RT, n=14) and creatine supplementation with resistance training (CR + RT, n=13). The subjects from CR+RT group received 5 g/day of creatine monohydrate and the subjects from the PL+RT group were given the same dose of maltodextrin. Participants were instructed to ingest the supplement on non-training days immediately after lunch and on training days immediately after resistance training sessions dissolved in a beverage comprising 100 g of maltodextrin lemon flavored. Participants of both groups undertook a supervised exercise training program for 12 weeks (3 times per week). The subjects were assessed at baseline and after 12 weeks. The primary outcome was muscle mass, assessed by dual energy X-ray absorptiometry (DXA). The secondary outcome included diagnose participants with one of the three stages of sarcopenia (presarcopenia, sarcopenia and severe sarcopenia) by skeletal muscle mass index (SMI), handgrip strength and gait speed. CR+RT group had a significant increase in SMI and muscle (p<0.0001), a significant decrease in android and gynoid fat (p = 0.028 and p=0.035, respectively) and a tendency of decreasing in body fat (p=0.053) after the intervention. PL+RT only had a significant increase in SMI (p=0.007). The main finding of this clinical trial indicated that creatine supplementation combined with resistance training was capable of increasing muscle mass in our elderly cohort (p=0.02). In addition, the number of subjects diagnosed with one of the three stages of sarcopenia at baseline decreased in the creatine supplemented group in comparison with the placebo group (CR+RT, n=-3; PL+RT, n=0). In summary, 12 weeks of creatine supplementation associated with resistance training resulted in increases in muscle mass. This is the first research with elderly of both sexes that show the same increase in muscle mass with a minor quantity of creatine supplementation in a short period. Future long-term research should investigate the effects of these interventions in sarcopenic elderly.

Keywords: creatine, dietetic supplement, elderly, resistance training

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959 Enabling Self-Care and Shared Decision Making for People Living with Dementia

Authors: Jonathan Turner, Julie Doyle, Laura O’Philbin, Dympna O’Sullivan

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People living with dementia should be at the centre of decision-making regarding goals for daily living. These goals include basic activities (dressing, hygiene, and mobility), advanced activities (finances, transportation, and shopping), and meaningful activities that promote well-being (pastimes and intellectual pursuits). However, there is limited involvement of people living with dementia in the design of technology to support their goals. A project is described that is co-designing intelligent computer-based support for, and with, people affected by dementia and their carers. The technology will support self-management, empower participation in shared decision-making with carers and help people living with dementia remain healthy and independent in their homes for longer. It includes information from the patient’s care plan, which documents medications, contacts, and the patient's wishes on end-of-life care. Importantly for this work, the plan can outline activities that should be maintained or worked towards, such as exercise or social contact. The authors discuss how to integrate care goal information from such a care plan with data collected from passive sensors in the patient’s home in order to deliver individualized planning and interventions for persons with dementia. A number of scientific challenges are addressed: First, to co-design with dementia patients and their carers computerized support for shared decision-making about their care while allowing the patient to share the care plan. Second, to develop a new and open monitoring framework with which to configure sensor technologies to collect data about whether goals and actions specified for a person in their care plan are being achieved. This is developed top-down by associating care quality types and metrics elicited from the co-design activities with types of data that can be collected within the home, from passive and active sensors, and from the patient’s feedback collected through a simple co-designed interface. These activities and data will be mapped to appropriate sensors and technological infrastructure with which to collect the data. Third, the application of machine learning models to analyze data collected via the sensing devices in order to investigate whether and to what extent activities outlined via the care plan are being achieved. The models will capture longitudinal data to track disease progression over time; as the disease progresses and captured data show that activities outlined in the care plan are not being achieved, the care plan may recommend alternative activities. Disease progression may also require care changes, and a data-driven approach can capture changes in a condition more quickly and allow care plans to evolve and be updated.

Keywords: care goals, decision-making, dementia, self-care, sensors

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958 Rapid-Access Multispecialty Nurse-Led Tongue Tie Service: A Retrospective Evaluation of Cost-Effectiveness

Authors: Jia Yin Tan, Daniel Rambei, Kate Mann, Samuel price, Ahmed Aboelela

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Introduction: Breastfeeding is a complex process, influenced by various factors. Tongue-tie may lead to breastfeeding difficulties due to an inability to suck effectively, causing sore nipples and poor infant weight gain. In the UK, most frenotomies on infants are performed by doctors, nurses, health visitors or midwives. Objectives: Evaluation of safety and efficacy of a multispecialty nurse-led rapid access tongue-tie service at Sheffield Children’s Hospital, run jointly by the ENT and paediatric surgery departments. Methodology: A retrospective observational study, including all patients attending the ENT and paediatric surgery nurse-led tongue tie clinics between 1/10/2021 and 30/09/2022. Results: During the study period there were 1135 referrals for frenotomy, with a mean of 15 days between referral to clinic episode. 86.8% of referred patients underwent frenotomy, with a complication rate of 0.1% and revision rate of 5.4%. Conclusions: Our findings suggest that our rapid access nurse-led outpatient tongue tie service is safe and efficacious, with low complication and revision rates. This suggests a potential for developing a community-based service, allowing safe and effective care closer to home.

Keywords: tongue tie, frenotomy, cost, nurse-led

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957 Chaotic Representation: Translating Gender in Cantonese Opera Performances

Authors: Kar Yue Chan

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Cantonese opera is a valuable heritage originated from South China, and started to span its influence across the area to Hong Kong, and became extremely popular back in the 1950s to the 1970s. It has also been honoured and recognized as one treasurable item on the Intangible Cultural Heritage of Humanity on the Representative List of UNESCO since 2009. A certain level of difficulty is encountered when one identifies the gender roles and representations from a usual performance of Cantonese opera, as conventional practices of Cantonese opera display to the audience that many of the male hero roles are played by female upon the prior knowledge of all audience, and it is understandable for them as well because in the past there were insufficient male actors and performers on the market. Female actresses, in some senses, are more capable to sing near-male voices, and their appearances in heroic operatic attires are more appreciated by general audience. Therefore, perspectives of 'feminine representation' and the 'Reception Theory' in literature are conducive to analyzing such phenomenon. In spite of some 'normal' performances with romantic love stories or historical accounts involving often a talented intellectual and a beautiful wise lady (in Chinese caizi jiaren 才子佳人), in which the male role is actually male and the female role is actually female, there have still been some opera titles specifically manifesting these extreme gender associations by putting together displacement of gender roles in the same performance in view of such chaotic complication. On top of all other factors, translators dealing with any operatic texts face plenty of challenges upon transferring Cantonese operatic performances into English. It is found that translators need to deal with cultural elements embedded in the lyrics; the form (which is as delicate as those deriving from classical Chinese poetry); the gender misplacements that affect the mood and tone of the lyrics that much when they are in the process of translating. Some lyrics and tunes are specifically designed for a particular gender role to perform, while some others are more generic; both of which require different and specific translation strategies. After scrutinizing the various sources of reference, readers of this paper should be well informed of a significance which lies in the refined nature of the poetic form and content that signifies in the way the distinguished gender voice segregation of the discourse from which the lyrics are derived, and definitely also through the on-stage performability aspect of the task. In order to produce a relatively short and concise translated version which fits performance needs, all of the above factors will be looked at in this paper with relevant examples and analysis.

Keywords: Cantonese opera, translation, chaotic gender, performance

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956 Urban Accessibility of Historical Cities: The Venetian Case Study

Authors: Valeria Tatano, Francesca Guidolin, Francesca Peltrera

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The preservation of historical Italian heritage, at the urban and architectural scale, has to consider restrictions and requirements connected with conservation issues and usability needs, which are often at odds with historical heritage preservation. Recent decades have been marked by the search for increased accessibility not only of public and private buildings, but to the whole historical city, also for people with disability. Moreover, in the last years the concepts of Smart City and Healthy City seek to improve accessibility both in terms of mobility (independent or assisted) and fruition of goods and services, also for historical cities. The principles of Inclusive Design have introduced new criteria for the improvement of public urban space, between current regulations and best practices. Moreover, they have contributed to transforming “special needs” into an opportunity of social innovation. These considerations find a field of research and analysis in the historical city of Venice, which is at the same time a site of UNESCO world heritage, a mass tourism destination bringing in visitors from all over the world and a city inhabited by an aging population. Due to its conformation, Venetian urban fabric is only partially accessible: about four thousand bridges divide thousands of islands, making it almost impossible to move independently. These urban characteristics and difficulties were the base, in the last 20 years, for several researches, experimentations and solutions with the aim of eliminating architectural barriers, in particular for the usability of bridges. The Venetian Municipality with the EBA Office and some external consultants realized several devices (e.g. the “stepped ramp” and the new accessible ramps for the Venice Marathon) that should determine an innovation for the city, passing from the use of mechanical replicable devices to specific architectural projects in order to guarantee autonomy in use. This paper intends to present the state-of-the-art in bridges accessibility, through an analysis based on Inclusive Design principles and on the current national and regional regulation. The purpose is to evaluate some possible strategies that could improve performances, between limits and possibilities of interventions. The aim of the research is to lay the foundations for the development of a strategic program for the City of Venice that could successfully bring together both conservation and improvement requirements.

Keywords: accessibility of historical cities, historical heritage preservation, inclusive design, technological and social innovation

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