Search results for: parents voice in disability

Authors: Saira Hossain

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Well-being commonly refers to the concept that equates to a good life. Similarly, student well-being can be understood as a notion of a good life at school. What constitutes a good life at school for students? – is an emerging question that poses huge interest in this area of research. Student well-being is not only associated with a student’s socio-emotional and academic development at school but also success in life after school as an adult. Today, student well-being is a popular agenda for educators, policymakers, teachers, parents, and most importantly, for students. With the emergence of student well-being, student's voice in matters important to them at school is increasingly getting priority. However, the coin has another side too. Despite the growing importance of understanding student well-being, it is still an alien concept in countries like Bangladesh. The education system of Bangladesh is highly rigid, centralized, and exam-focused. Student's academic achievement has been given the utmost priority at school, whereas their voice, as well as their well-being, is grossly neglected in practice. In this regard, the study set out to explore students' conceptualization of well-being at school in Bangladesh. The study was qualitative. It employed a participatory research approach to elicit the views of 25 secondary school students of aged 14-16 in Bangladesh to explore the concept of well-being. Data analysis was conducted following the thematic analysis technique. The results suggested that student conceptualized well-being as a multidimensional concept with multiple domains, including having, being, relating, feeling, thinking, functioning, and striving. The future implication of the study findings is discussed. Additionally, the study also underscores the implication of the participatory approach as a research technique to explore students' opinion in Bangladesh, where there exists a culture of silence regarding the student's voice.

Keywords: Bangladesh, participatory research, secondary school, student well-being

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Authors: Jennifer Natalya Fink

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Since the racial reckoning of 2020, almost every major educational institution has incorporated diversity, equity, and inclusion (DEI) principles into its administrative, hiring, and pedagogical practices. Yet these DEI principles rarely incorporate explicit language or critical thinking about disability. Despite the fact that according to the World Health Organization, one in five people worldwide is disabled, making disabled people the larger minority group in the world, disability remains the neglected stepchild of DEI. Drawing on disability studies and crip theory frameworks, the underlying causes of this exclusion of disability from DEI, such as stigma, shame, invisible disabilities, institutionalization/segregation/delineation from family, and competing models and definitions of disability are examined. This paper explores both the ideological and practical shifts necessary to include disability in university DEI initiatives. It offers positive examples as well as conceptual frameworks such as 'divers ability' for so doing. Using Georgetown University’s 2020-2022 DEI initiatives as a case study, this paper describes how curricular infusion, accessibility, identity, community, and diversity administration infused one university’s DEI initiatives with concrete disability-inclusive measures. It concludes with a consideration of how the very framework of DEI itself might be challenged and transformed if disability were to be included.

Keywords: diversity, equity, inclusion, disability, crip theory, accessibility

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Authors: Patrizia Bonaventura, Magda Di Renzo

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This project aims to measure and assess the voice quality in children with autism. Few previous studies exist which have analyzed the voice quality of individuals with autism: abnormal voice characteristics have been found, like a high pitch, great pitch range, and sing-song quality. Existing studies did not focus specifically on Italian-speaking children’s voices and provided analysis of a few acoustic parameters. The present study aimed to gather more data and to perform acoustic analysis of the voice of children with autism in order to identify patterns of abnormal voice features that might shed some light on the causes of the dysphonia and possibly be used to create a pediatric assessment tool for early identification of autism. The participants were five native Italian-speaking boys with autism between the age of 4 years and 10 years (mean 6.8 ± SD 1.4). The children had a diagnosis of autism, were verbal, and had no other comorbid conditions (like Down syndrome or ADHD). The voices of the autistic children were recorded in the production of sustained vowels [ah] and [ih] and of sentences from the Italian version of the CAPE-V voice assessment test. The following voice parameters, representative of normal quality, were analyzed by acoustic spectrography through Praat: Speaking Fundamental Frequency, F0 range, average intensity, and dynamic range. The results showed that the pitch parameters (Speaking Fundamental Frequency and F0 range), as well as the intensity parameters (average intensity and dynamic range), were significantly different from the relative normal reference thresholds. Also, variability among children was found, so confirming a tendency revealed in previous studies of individual variation in these aspects of voice quality. The results indicate a general pattern of abnormal voice quality characterized by a high pitch and large variations in pitch and intensity. These acoustic voice characteristics found in Italian-speaking autistic children match those found in children speaking other languages, indicating that autism symptoms affecting voice quality might be independent of the native language of the children.

Keywords: autism, voice disorders, speech science, acoustic analysis of voice

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Authors: Ebele V. Okoli, Emmanuel Nwobi, Dozie Ezechukwu, Ijeoma Itanyi

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One in seven people worldwide suffer from a disability. 80% of people with disabilities live in developing countries. Negative attitudes and misconceptions among health-care providers constitute barri¬ers to optimal health care for people with disabilities. This underscores the relevance of a study of the attitude of Nigerian medical students towards disability and their willingness to work in the disability sector. This was a descriptive cross-sectional study conducted among 254 penultimate and final year medical students of a university in southeastern Nigeria. The mean age of the students was 24.8 ± 3.12 years. Majority of the students were male (75.2%), single (96.9%), of the Igbo tribe (86.6%), Christian (97.6%) and grew up in urban areas (68.1%). Results indicated that the medical students had a predominantly positive attitude towards people with disability as 73.8% had a positive attitude and mean attitude score was 67.03 ± 0.14 (positive attitude = 61 – 120, negative attitude = 0 - 60). Chi-square analysis did not show any significant effect of demographic and social factors on the students’ attitude towards People with Disabilities. The students were mostly willing to work in areas that address the challenges of people with disability (70.4%) but a greater proportion had never heard about Disability Studies (67.5%). About a third of the students (33.2%) would like to travel abroad to practice in the disability sector. Conclusions: The students generally had a positive attitude towards people with disability and a greater percentage were willing to work in the disability sector in their future career. About two-thirds had however, never heard about disability studies. There was some potential for brain drain among the students as a third of the population intended to practice abroad on graduation.

Keywords: attitudes, career interest, disability, medical students

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Authors: Vesna Kirandziska, Nevena Ackovska, Ana Madevska Bogdanova

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The problem of emotion recognition is a challenging problem. It is still an open problem from the aspect of both intelligent systems and psychology. In this paper, both voice features and facial features are used for building an emotion recognition system. A Support Vector Machine classifiers are built by using raw data from video recordings. In this paper, the results obtained for the emotion recognition are given, and a discussion about the validity and the expressiveness of different emotions is presented. A comparison between the classifiers build from facial data only, voice data only and from the combination of both data is made here. The need for a better combination of the information from facial expression and voice data is argued.

Keywords: emotion recognition, facial recognition, signal processing, machine learning

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Authors: Alicia Greenbank, Efrat Bengio

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The aim of this research was to examine the efficacy of the first course in Israel, whose objective is to train student teachers in the special education department to work cooperatively with parents of children with special needs. Studies often highlight the importance of cooperation between teachers and parents of students with special needs. Israel’s Special Education Law defines parents as complete partners, and the Ministry of Education encourages and even requires that partnership be present. Yet this partnership is difficult to achieve many kindergarten teachers, and teachers have a lot of difficulties establishing and managing a pattern of cooperation with their students’ parents. Often we see different perspectives on the child's development and needs, distrust, lack of appreciation, and communication difficulties on both sides – parents & teachers. The course describes a method of instilling the need for cooperation at an early stage of teacher training-in the teacher training program. 22 students in the special education program for early childhood education in the fourth year of learning took part in the course. The fourth-year is the experiential training year and the first time that students have worked in a school. The course consisted of 14 sessions. Seven parents of students with different disabilities participated at 6 of the sessions. The changes in the students' attitudes towards partnership and their ability to manage this partnership were carried out by examining the reports written by the students before the meetings with the parents and the reflections they wrote after each meeting with the parents and at the end of the course. Three themes emerged from the narrative analysis, corresponding to the three preconditions for joint activities with parents — Approach, Attitude, Appropriate Atmosphere, according to the Four A’s Model. The findings showed that a course combining meetings with parents of children with special needs offers many benefits for teacher training. The course raised student awareness of the question partnership, changed students’ approaches and attitudes towards the parents, stressed the importance of partnership, and provided students with tools for working with parents through the school. Based on the findings of this study, courses in this format can be applied in order to cooperate between teachers and parents, for example, parents of gifted children with special needs.

Keywords: Partnership with parents in special education, parents of children with disabilities, parents of children with special needs, parents’ involvement in special education

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Authors: Chandimal Jayawardena, Ridmal Mendis, Manoji Tennakoon, Theekshana Wijayathilaka, Randima Marasinghe

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This research paper defines the research area of the implementation of the socially assistive robot (SLIITBOT). It consists of the overall process implemented within the robot’s system and limitations, along with a literature survey. This project considers developing a socially assistive robot called SLIITBOT that will interact using its voice outputs and graphical user interface with people within the university and benefit them with updates and tasks. The robot will be able to detect a person when he/she enters the room, navigate towards the position the human is standing, welcome and greet the particular person with a simple conversation using its voice, introduce the services through its voice, and provide the person with services through an electronic input via an app while guiding the person with voice outputs.

Keywords: application, detection, dialogue, navigation

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Authors: Anne Heirman, Vincent van der Noort, Rob van Son, Marije Petersen, Lisette van der Molen, Gyorgy Halmos, Richard Dirven, Michiel van den Brekel

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Objective: Voice prosthesis leakage significantly impacts laryngectomies patients' quality of life, causing insecurity and frequent unplanned hospital visits and costs. In this study, the concept of prophylactic voice prosthesis replacement was explored to prevent leakages. Study Design: A retrospective cohort study. Setting: Tertiary hospital. Methods: Device lifetimes and voice prosthesis replacements of a retrospective cohort, including all patients with laryngectomies between 2000 and 2012 in the Netherlands Cancer Institute, were used to calculate the number of needed voice prostheses per patient per year when preventing 70% of the leakages by prophylactic replacement. Various strategies for the timing of prophylactic replacement were considered: Adaptive strategies based on the individual patient’s history of replacement and fixed strategies based on the results of patients with similar voice prosthesis or treatment characteristics. Results: Patients used a median of 3.4 voice prostheses per year (range 0.1-48.1). We found a high inter-and intrapatient variability in device lifetime. When applying prophylactic replacement, this would become a median of 9.4 voice prostheses per year, which means replacement every 38 days, implying more than six additional voice prostheses per patient per year. The individual adaptive model showed that preventing 70% of the leakages was impossible for most patients, and only a median of 25% can be prevented. Monte-Carlo simulations showed that prophylactic replacement is not feasible due to the high Coefficient of Variation (Standard Deviation/Mean) in device lifetime. Conclusion: Based on our simulations, prophylactic replacement of voice prostheses is not feasible due to high inter-and intrapatient variation in device lifetime.

Keywords: voice prosthesis, voice rehabilitation, total laryngectomy, prosthetic leakage, device lifetime

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Authors: D. Beckwith

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This research explored sexual identity for women with physical disability, both congenital and acquired. It also explored whether exposure to violence or negative risk-taking had played a role in their intimate relationships. This phenomenological research used semi-structured interviews and photo elicitation with the researcher’s insider knowledge adding experiential substance and understanding to the discussion. Findings confirm sexuality for women with physical disability is marginalised and de-gendered making it less of a priority for professionals and policy makers and emphasising the need to more effectively support women with disability in relation to their sexuality, sexual expression and violence.

Keywords: lived-experience, identity, PhotoVoice, sexuality, violence, women with physical disability

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Authors: Soungwan Kim

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The present study analyzed the effect of discrimination experience on the life satisfaction in women with severe disabilities and the mediating effect of disability acceptance. In verifying this mediating effect of disability acceptance between discrimination experience and life satisfaction, both discrimination experience and disability acceptance were found to be statistically significant in the first and second phases. Disability acceptance was found to have a mediating effect on the relationship between discrimination experience and life satisfaction. Based on this finding, measures for enhancing the quality of life in individuals with disabilities that experience low levels of life satisfaction were proposed.

Keywords: disability discrimination, disability acceptance, life satisfaction, mediating effect

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Authors: Djamila Meghraoui, Bachir Boudraa, Thouraya Meksen, M.Boudraa

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Parkinson's disease is a pathology that involves characteristic perturbations in patients’ voices. This paper describes a proposed method that aims to diagnose persons with Parkinson (PWP) by analyzing on line their voices signals. First, Thresholds signals alterations are determined by the Multi-Dimensional Voice Program (MDVP). Principal Analysis (PCA) is exploited to select the main voice principal componentsthat are significantly affected in a patient. The decision phase is realized by a Mul-tinomial Bayes (MNB) Classifier that categorizes an analyzed voice in one of the two resulting classes: healthy or PWP. The prediction accuracy achieved reaching 98.8% is very promising.

Keywords: Parkinson’s disease recognition, PCA, MDVP, multinomial Naive Bayes

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Authors: Valentina Manna, Oscar Pisanti

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The term sibling has been adopted by Italian brothers and sisters of people with disabilities, to define themselves as a group with shared features. This choice is due to the importance of underlying the centrality of what being a brother/sister means to these people because of and beyond the disability. Being a sibling offers great opportunities to develop empathy and relational skills but it may also amplify the typical dynamics of fraternal relationships dealing with envy, rivalry and concern. This outlines a condition of potential developmental risk for the non-disabled sibling, being at the same time a great resource for the child with special needs, as actor of an intimate relationship usually lasting after that one with parents. However, young siblings are often unheeded in their needs for comprehension of disability and not considered as persons requiring attention themselves. Moreover, scholars have scarcely undertaken an exploration of siblings’ perspective as competent contributors for producing knowledge useful to the benefit of families with special needs children. This contribution describes a preventive intervention for young siblings (6 – 16 years) of children with Down syndrome, by means of a psychodynamic-oriented group where participants could communicate, explore and share their emotional experiences as siblings. Based on a participatory approach, the program represents an action-research project, involving siblings as key experts for our understanding of siblings’ lives. The initiative used social media and video technologies to rise children’s voice: as a final product, participants were involved in the realization of a video campaign –which they defined ‘a difficult advertising’– built on the insights generated by the program and addressed to other siblings to help them facing and recognizing resources and difficulties related to their status. The final video campaign realized by the participants summarizes the main themes emerged during the intervention; as revealed by a thematic analysis, they are related to the difficulty in feeling to have a personal identity, to face disability as a form of ‘untought known’ and to integrate ambivalent emotions. In conclusion, the group device revealed its efficacy as a preventive tool: it allowed participants to deeply reflect on their own experiences and to communicate them for the first time in a verbal and mentalized form.

Keywords: down syndrome, group, siblings, prevention

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Authors: Ayelet Gur

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Background: In recent years we are witnessing a welcome trend in which more children/persons with disabilities are living at home with their families and within their communities. This trend is related to various policy innovations as the UN Convention on the Rights of People with Disabilities that reflect a shift from the medical-institutional model to a human rights approach. We also witness the emergence of family centered approaches that perceive the family and not just the individual with the disability as a worthy target of policy planning, implementation and evaluation efforts. The current investigation aims to explore economic, psychological and social factors among households of families of children or adults with intellectual disabilities in Israel and to present policy recommendation. Methods: A national sample of 301 households was recruited through the education and employment settings of persons with intellectual disability. The main caregiver of the person with the disability (a parent) was interviewed. Measurements included the income and expense surveys; assets and debts questionnaire; the questionnaire on resources and stress; the social involvement questionnaire and Personal Wellbeing Index. Results: Findings indicate significant gaps in financial circumstances between households of families of children with intellectual disabilities and households of the general Israeli society. Households of families of children with intellectual disabilities report lower income and higher expenditures and loans than the general society. They experience difficulties in saving and coping with unexpected expenses. Caregivers (the parents) experience high stress, low social participation, low financial support from family, friend and non-governmental organizations and decreased well-being. They are highly dependent on social security allowances which constituted 40% of the household's income. Conclusions: Households' dependency on social security allowances may seem contradictory to the encouragement of persons with intellectual disabilities to favor independent living in light of the human rights approach to disability. New policy should aim at reducing caregivers' stress and enhance their social participation and support, with special emphasis on families of lower socio-economic status. Finally, there is a need to continue monitoring the economic and psycho-social needs of households of families of children with intellectual disabilities and other developmental disabilities.

Keywords: disability policy, family policy, intellectual and developmental disabilities, Israel, households study, parents of children with disabilities

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Authors: Ephraim Ibekwe

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The field of biomedical science has offered modern man more options to choose from than ever before about what their future children will be or look like. Today, embryo selection techniques, for instance, has availed most people the power to choose the sex of their child, to avoid the birth of a child with a disability, or even to choose deliberately to create a disabled child. With new biotechnological tools emerging daily, many people deem parents personally and socially responsible for the results of their choosing to bear children, i.e. all tests should be done, and parents are responsible for only “keeping” healthy children. Some fear parents may soon be left to their own devices if they have children who require extra time and social spending. As with other discoveries in the area of genetic engineering, such possibilities raise important ethical issues – questions about which of these choices are morally permissible or morally wrong. Hence, the preoccupation of this article is to understand the extent to which the questions that Eugenics posits on the human person can be answered with keen clarity. With an analytical posture, this article, while not deriding the impact of biotechnology and the medical sciences, argues for Human dignity in its strictest consideration.

Keywords: dignity, eugenics, human person, technology and biomedical science

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Authors: Marthella Rivera Roidatua

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Since the release of Convention on the Rights of Persons with Disabilities in 2006, disability became a mainstreamed global issue. Many developed countries have shown the continuous effort to improve their disability employment policy, for example, the US and the UK with their integrated support system through disability benefits. Relative little recent research on developing country is available. Surprisingly, Indonesia, just enacted the Law No.8/2016 on Disability that bravely highlighted on integrating disabled people into the workforce. It shows a positive progress shifting traditional perspective to what Tom Shakespeare’s concept of a social model of disability. But, the main question is how can this law support the disabled people to access and maintain paid work. Thus, besides the earlier literature reviews, interviews with leading sectors, Ministry of Social Affairs and Ministry of Manpower, was conducted to examine government’s attitude towards the disabled worker. Insights from two local social enterprises on disability were also engaged in building better perspective. The various source of data was triangulated then analysed with a thematic approach. Results were encouraging the Indonesian government to have a better collaboration with other impactful local organisations in promoting the disability employment. In the end, this paper also recommends the government to make a reasonable adjustment and practical guideline for companies in hiring disabled.

Keywords: disability, employment, policy, Indonesia, collaboration, guidelines

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Authors: Luke S. Carlos A. Thompson

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The medical model of disability, though beneficial for the medical professional, is often exclusionary, restrictive and dehumanizing when applied to the lived experience of disability. As a result, a critique of this model was constructed called the social model of disability. Much of the language used to articulate the purpose behind the social model of disability can be summed up within the word inclusion. However, this essay asserts that inclusiveness is an incomplete aspiration. The social model, as it currently stands, does not aid in creating a society where those with impairments actually belong. Rather, the social model aids in lessening the visibility, or negative consequence of, difference. Therefore, the social model does not invite society to welcome those with physical and intellectual impairments. It simply aids society in ignoring the existence of impairment by removing explicit forms of exclusion. Rather than simple inclusion, then, this essay uses John Swinton’s concept of friendship and Jean Vanier’s understanding of belonging to better articulate the intended outcome of the social model—a society where everyone can belong.

Keywords: belong, community, differently-able, disability, exclusion, friendship, inclusion, normality

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Authors: Lucie Pospíšilová, Robert Osman, Hana Porkertová

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The scholarly literature demonstrates disability and masculinity in conflict with each other. While disability is associated with dependence, weakness, or helplessness, masculinity is associated with independence, strength, and power. Thus, disabled masculinity might be a dilemma experienced on a personal level. The relationship between masculinity and disability is also interesting from a geographical point of view because the conception of space is gendered. In our society, the skills like spatial orientation, working with the maps, and navigation technologies as same as with scale are associated with masculinity. And because these skills are related to the visual imagination, it is the blindness that is associated with the limitation or even the absence of them. Thus, the conflict of masculinity and disability in the spatial experience is very well apparent in the case of visually impaired men. To study this conflict can tell us a lot not only about the experience of visually impaired men but also about the conception of space in geography and in our society. The paper uses Henri Lefebvre's theory of space based on a triad of spatial practice, representations of space, and representational space. It answers the question: How masculinity and disability intersect in the spatial experience of visually impaired men? The data come from research conducted in Brno and Prague (Czechia) in 2020 and 2021 and include 7 interviews and 6 go-alongs with visually impaired men.

Keywords: disability, masculinity, abstract space, spatial experience, visually impaired men

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Authors: Alieh Arasteh

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The main purpose of this study was to investigate the effect of parents and educators on the self-control of children in pre-primary schools in District 5 of Tehran. The method of this survey was a survey and post-correlation type. The statistical population of this study included all teachers and parents of children in preschool centers in the region. The 5th city of Tehran in 1397 was the number of kindergartens in 117 centers and the number of parents was 1872, the sample size of the parents was 320 and the sample size of the trainers was 76. The method of sampling in this study was randomized and clustered. The data gathering tool was Rosenbaum and Ronen (1992) self-control skills, a five-factor questionnaire NEO personality Costa and McCrae (1985) and a questionnaire on demographic characteristics, reliability using Cronbach's alpha, the data analysis was performed using the software spss24. The results of the research showed that the personality characteristics of parents, parents' socioeconomic status and personality traits of educators affect the self-control dimensions of pre-primary school children (P <0.05).

Keywords: self-control, pre-primary school, the effect of parents, couches

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Authors: Farzaneh Yazdani, Nastaran Yazdani, Laya Nobakht

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The aim of this study was to explore the changes that may happen in students attitudes regarding disability after attending the module ‘Disability: theories, nature and experiences’ designed around reflective self-awareness exercises. Literature indicates enhanced knowledge does not automatically lead to changes in attitude. Health care professionals are the most significant people to instil hope in their clients to pursue a happy life. As an advocate for people with disability, health care professionals need to believe themselves in people with disability being able to pursue a happy life as an abled body does. Researchers aimed to explore the impact of the ‘Disability’ module using discussion and reflective exercises, on students’ way of thinking and possible changes in attitude towards disability. Students were asked to write stories from the beginning and after completing the module. A thematic analysis was applied to identify the students’ way of communicating their thoughts and feelings about disable-bodied /disability before and after the module. Three major themes were identified to represent the differences before and after attending the module as: problem /solution oriented approach towards perceived problems, separating/ integrating disable/able-bodied, passive/ active role of disable-bodied and society.

Keywords: qualitative study, reflection, rehabilitation, thematic analysis

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Authors: Sera Ratu, Jane Chivers, Jessica Botfield

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Objectives: The Reproductive and Family Health Association of Fiji (RFHAF) and Family Planning Australia are working together to introduce quality comprehensive sexuality education into Special Schools - which are schools for students with disability. Sexual and reproductive health information is needed by students with disability attending Special Schools. Children with special needs go through the same changes as able-bodied children. The Fiji Disability Inclusion project is a three-year project that started in 2015. One of its objectives is to increase exposure to comprehensive sexuality education for primary and secondary school students with disability. Method: A baseline survey was undertaken with 72 students with disability; it included questions about puberty, sexual health, and relationships. 34 teachers also completed a survey about their views of sexuality education and confidence in delivering it. Consent was facilitated by running information sessions with teachers and parents. The process of gaining consent and completing the surveys was designed to be accessible to students with disability. Given the sensitive nature of reproductive and sexual health, and the potential vulnerability of young people with disability, ethical considerations were important in the design and implementation of the surveys, and ethics approval was obtained. Results: Findings from the surveys suggest that students have mixed knowledge and awareness of sexual health issues. Most teachers reported a need for their students to learn about sexuality and relationships. A positive outcome of conducting the surveys was that RFHAF staff reported they have developed skills and confidence in communicating with young people with a range of disabilities. They have a greater understanding of what students want to learn, and what teachers feel is important. Conclusions: These survey findings will assist RFHAF in developing comprehensive sexuality education programs that are relevant and accessible to students in Special Schools, and to develop an appropriate professional development program for teachers. Findings may also be applicable to other Special Schools when developing sexuality education programs. The education programs developed for students as part of this project, and the professional development programs for teachers, may be relevant to other countries.

Keywords: comprehensive sexuality education, delivery, sexual and reproductive health and rights, special schools

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Authors: Beata Horníckova, Sona Lorencova

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The study deals with the presentation of the results of quantitatively oriented research. The research was conducted as part of a questionnaire survey with the aim to find out what are the attitudes of parents to compulsory preschool education in the Czech Republic. This research presents results from the area of importance of compulsory pre-school education from the parents’ perspective. The research method was a questionnaire, which was distributed to respondents through an online platform. The research involved 107 parents, who answered a total of 36 questions that found out their attitudes to last year’s compulsory preschool attendance. The results show that compulsory pre-school attendance has increased the importance of pre-school education. However, the results also show that the compulsory last year of pre-school education is not more important according to parents than in previous years. Most participants consider compulsory pre-school attendance to be important and are happy that their child attends it. The results reveal the fact that the introduction of compulsory pre-school attendance has contributed to the importance of parents’ perceptions of pre-primary education.

Keywords: compulsory pre-school education, education of pre-school children, kindergarten, parents

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Authors: Fatima El Zahra Amin, Emine Efe

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This study was carried out to evaluate the effect of the education program for parents of children with Sickle Cell Anemia, on the knowledge level of parents and the reduction of pain relief by non-pharmacological methods used by parents at home. In Turkey, 54 parents and 109 from Chad agreed to participate in the survey. The data were collected by the researcher using a face-to-face interview method. Non-pharmacological treatment information form for parents, face expressions rating scale, and parent education program for non-pharmacological methods used in children with sickle cell anemia were used. It was determined that there was a statistically significant difference between the educational status, occupation, disease status, place of residence, family structure and age of parents of Chad and Turkey. According to the ratings of facial expressions scale, it was concluded that there was no significant difference between the children’s average degree of pain before and after administration of non-pharmacological methods by the groups of Chad and Turkey. It was determined that the educational programs prepared for parents of children with sickle cell anemia in both Turkey and Chad were effective in increasing the knowledge level of parents and also in reducing pain crisis with non-pharmacological methods parents used at home.

Keywords: Chad, child, non-pharmacological treatment methods, nurse, sickle cell anemia, Turkey

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Authors: Anita Ghai

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The present paper explores the imperative to establish disability studies as an independent area of academic inquiry in India through the establishment of specific programmes in disability studies. The case study of the efforts made by the Ambedkar University, Delhi, to develop such programs and courses shall be used to substantiate this imperative as well as to explore some of the challenges entailed. The paper shall explore the certain extent aspects of relevant scholarship in the area of disability studies in India today and critically reflect on the perspectives of disability in this scholarship. The study of disability in India has hitherto been the prerogative of special education, rehabilitation psychology, and social work departments. While instances of these departments adopting critical approaches to disability can be identified, their empirical focus has perpetuated the production of disability as the site of suffering and oppression. The complex cultural, phenomenological, historical and economic discourses within which disability is embedded can be better captured within distinctive programmes that have disability sui generis as their focus. Such programs would foreground disability as an epistemology, which universalizes the study of disability from disabled people alone to an analysis of various other groups who have been historically marginalized. It will also play an important role in recuperating disability from a state of alterity. The interdisciplinary nature of disability studies offers an opportunity to integrate perspectives from the humanities and the social sciences in the proposed programs. Some of the challenges or rather aspects of reflection that emerge in the course of developing these programs are the criteria for determining the suitability of faculty to teach these programs and the challenges in identifying faculty and in addressing any apprehensions about career prospects that prospective students might have. The manner in which these concerns are being addressed through the collaboration of expertise as well as through the interdisciplinary and flexible nature of the program shall be addressed in the course of the paper. In conclusion, the paper shall foreground the need for disability studies programs in India, the re-appropriation of existing scholarship in the process of formulation these programs, emerging concerns and the manner in which these concerns will be addressed.

Keywords: academia, disability studies, epistemology, India

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Authors: A. Pedro, T. Goldschmidt

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Dyspraxia affects approximately 5-6% of school aged children. Utilising an ecological framework, this study aimed to (1) explore the awareness and understanding of dyspraxia or similar disorders among preschool parents and (2) to explore what skills are required or sought after by parents of children presenting with dyspraxia. A qualitative methodological approach with an exploratory design was employed in this study. A total of 15 parents were purposively selected from urban mainstream preschools in the Cape Town metropole region. Data were collected by means of semi-structured interviews and analysed thematically according to Braun and Clarke (2006). Participants were knowledgeable of their rights throughout the research process. The findings reveal that parents understanding of dyspraxia hinges on observable characteristics of their children’s abilities in comparison to typically developing children. Although parents are aware of ways to explore various avenues to better assist their child, they desire more social support and skills in terms of resources to inform them about their child’s difficulties as well as different techniques to better manage their child’s condition. Findings indicate that regular contact between preschool teachers and parents of children presenting with dyspraxia is an important factor in children’s academic success. The implications of the findings are related to the awareness of dyspraxia and similar learning disorders among both parents and teachers.

Keywords: awareness and understanding, dyspraxia, parents, preschool

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Authors: Hector Jose Velazquez-Gonzalez, Norma Maldonado-Santiago, Laura Pietri-Gomez

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Cancer is one of the first cause of death in the world, most of them are women. In Puerto Rico, there is a permanent controversy on the conceptuation of what really involves a disability, also in when a chronic illness, like cancer, should be considered a disability. The aim of the research was to identify functional limitation in 50 women survivors of cancer. In turn, to know the meanings that 6 women attributed to cancer with a focus on functionality. We conducted a mix method research based on surveys and narratives. We administered the World Health Organization Disability Assessment, version 2.0, which obtained a Cronbach’s alpha of .949 on the general scale, and from .773 to .956 on the six domains. The domain that obtained the highest average was social participation (M= 33.89, SD= 20.434), but it was not significant in the disability percentage. Also, there was no significance in the disability percentage in the other five domains. In a matter of meanings, we conduct a semistructured interview to 6 participants. All of them do not refer to cancer as a disability, either they do not know that in Puerto Rico cancer is considered as a disability by the law. However, participants agree that cancer at the time of treatment and subsequent to it, has significant effects on functional limitations (fatigue, pain, cognitive limitations, and weakness, among others. Psychooncologic practice should encourage the constant assessment of the functionality to identify the needs that emerge from oncological diagnosis. So that psychosocial intervention could be considered as critical in cancer treatment to promote a better quality of life and well-being in a person with cancer.

Keywords: cancer, Puerto Rico, disability, psychosocial approach

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Authors: Myriam Rousseau, Marie-Hélène Poulin, Suzie McKinnon, Jacinthe Bourassa

Abstract:

Context: There is a growing demand for effective training programs for parents of children with autism spectrum disorders. While traditional in-person training is effective, it can be difficult for some parents to participate due to distance, time, and cost. Telepractice, a form of distance education, could be a viable alternative to address these challenges. Research objective: The objective of this study is to explore the experiences of parents of children with autism who participated in a training program offered by telepractice in order to document: 1) the experience of parents who participated in a program telepractice training program for autistic children, 2) parental satisfaction with the telepractice modality, and 3) potential benefits of using telepractice to deliver training programs to parents of autistic children. Method: This study followed a qualitative research design, and Braun and Clarke's six-step procedure was used for the thematic analysis of the comments provided by parents. Data were collected through individual interviews with parents who participated in the project. The analysis focused on identifying patterns and themes in the comments in order to better understand parents' experiences with the telepractice modality. Results: The study revealed that parents were generally satisfied with the telepractice modality, as it was easy to use and enabled a better balance between work and family. This modality also enabled parents to share and receive mutual support. Despite the positive results, it is still relevant to offer training in different modalities to meet the different needs of parents. Conclusion: The study shows that parents of children with autism are generally satisfied with telepractice as a training modality. The results suggest that telepractice can be an effective alternative to traditional face-to-face training. The study highlights the importance of taking parents' needs and preferences into account when designing and implementing training programs.

Keywords: parents, children, training, telepractice

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Authors: Surbhi Mathur, J. M. Vyas

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Although the rapid development of forensic speaker recognition technology has been conducted, there are still many problems to be solved. The biggest problem arises when the cases involving disguised voice samples come across for the purpose of examination and identification. Such type of voice samples of anonymous callers is frequently encountered in crimes involving kidnapping, blackmailing, hoax extortion and many more, where the speaker makes a deliberate effort to manipulate their natural voice in order to conceal their identity due to the fear of being caught. Voice disguise causes serious damage to the natural vocal parameters of the speakers and thus complicates the process of identification. The sole objective of this doctoral project is to find out the possibility of rendering definite opinions in cases involving disguised speech by experimentally determining the effects of different disguise forms on personal identification and percentage rate of speaker recognition for various voice disguise techniques such as raised pitch, lower pitch, increased nasality, covering the mouth, constricting tract, obstacle in mouth etc by analyzing and comparing the amount of phonetic and acoustic variation in of artificial (disguised) and natural sample of an individual, by auditory as well as spectrographic analysis.

Keywords: forensic, speaker recognition, voice, speech, disguise, identification

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Authors: Samereh Abdoli, Amit Vora, Anusha Vora

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Aim: To qualitatively investigate diabetes burnout in parents of children with Type 1 Diabetes (T1D) who shared their experiences through YouTube videos in order to inform future interventions and improve diabetes practice. Methods: A qualitative descriptive approach was used to explore YouTube videos. Of the 568 videos that were identified, only 9 videos met the inclusion criteria of the study. Results: After the videos were transcribed and analyzed using qualitative content analysis, it was revealed that parents shared common concerns and experiences and they translated into three main themes: I do not ever get a break, I am exhausted, I can’t burn out, and I just need a break Conclusion: All in all, the literature revealed that there are negative psychosocial outcomes associated with caring for a child with T1D, but there is a lack of information on diabetes burnout and how parents’ well-being are affected. Reports of self-neglect and sleep deprivation only confirm the need for intervention for parents of children with T1D. The hope with this study is that burnout can be recognized early on and appropriate interventions put in place to help parents cope with the stressors of caring for a child with a chronic disease.

Keywords: Diabetes burnout, type 1 diabetes, qualitative research, parents

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Authors: Kajori Banerjee, Laxmi Kant Dwivedi

Abstract:

“Health transition” is defined to be “a process through which high levels of mortality, morbidity and disability are reduced to low levels by influencing cultural, social and behavioural factors”. Life expectancy in India has been on the rise and parallel the burden of disease and disability has also risen noticeably. Borrowing data from Indian Census (2001, 2011), this study identifies the gender-wise burden of disability by calculating disability free life expectancy (DFLE) and life lived with disability (LWD). Sullivan’s method of calculating DFLE using proportion of disabled is used for this purpose. The change in person years lived with disability in the decade 2001-11 is further decomposed using Arriaga’s method into mortality and disability effects (ME and DE) to check the magnitude and direction of contribution of mortality and disability. Nationally, along with DFLE, LWD has amplified too. Despite having the highest life expectancy and DFLE, LWD in Kerala, was highest for both sexes in 2001. But in 2011, the LWD was highest among the males of Orissa and females of Rajasthan. For the overall population, DE is positive for the prime working age groups of 20-40years indicating that there has been an increase in the disability proportion holding mortality constant for 2001-2011. Females exhibit higher positive DE implying greater loss of healthy years due to disability than males. The findings call for an immediate attention to the causes of rising disability burden among the working population, especially females, as this might heavily effect the availability of quality labour force and its relative economic output in the Indian labour market. This also hints at the degrading quality of the elongated life and needs to be given the required attention to enhance the quality of life lead in the Nation.

Keywords: disability-free life expectancy, disability effect, life expectancy, mortality effect

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Authors: Chimuanya Osuji, Kido Uyamasi, Morgan Bradley

Abstract:

Introduction: Obesity is a major risk factor for many chronic diseases, with higher rates occurring among certain populations. Even though disparities in obesity rates exist for those with disabilities, few studies have assessed the association between disability and obesity status. This study aims to examine the association between type of disability and obesity status among US adults during the Covid-19 pandemic (2019-2021). Methods: Data for this cross-sectional study was obtained from the 2019, 2020 and 2021 NHIS. Multinomial logistic regressions were used to assess the relationship between each type of disability and obesity status (reference= normal/underweight). Each model adjusted for demographic, health status and health-related quality of life variables. Statistical analyses were conducted using SAS version 9.4. Results: Of the 82,632 US adults who completed the NHIS in 2019, 2020, and 2021. 8.9% (n= 7,354) reported at least 1 disability-related condition. Respondents reported having a disability across vision (1.5%), hearing (1.5%), mobility (5.3%), communication (0.8%), cognition (2.4%) and self-care (1.1%) domains. After adjusting for covariates, adults with at least 1 disability-related condition were about 30% more likely to have moderate-severe obesity (AOR=1.3; 95% CI=1.11, 1.53). Mobility was the only disability category positively associated with mild obesity (AOR=1.16; 95% CI=1.01, 1.35) and moderate/severe obesity (AOR=1.6; 95% CI=1.35, 1.89). Individuals with vision disability were about 35% less likely to have mild obesity (AOR=0.66; 95% CI=0.51, 0.86) and moderate-severe obesity (AOR=0.66; 95% CI= 0.48, 0.9). Individuals with hearing disability were 28% less likely to have mild obesity (AOR=0.72; 95% CI= 0.56, 0.94). Individuals with communication disability were about 30% less likely to be overweight (AOR=0.66; 95% CI=0.47, 0.93) and 50% less likely to have mild obesity (AOR=0.45; 95% CI= 0.29, 0.71). Individuals with cognitive disability were about 25% less likely to have mild obesity and about 35% less likely to have moderate-severe obesity. Individuals with self-care disability were about 30% less likely to be overweight. Conclusion: Mobility-related disabilities are significantly associated with obesity status among adults residing in the United States. Researchers and policy makers should implement obesity intervention methods that can address the gap in obesity prevalence rates among those with and without disabilities.

Keywords: cognition, disability, mobility, obesity

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