Search results for: sibling’s lived experience of disability

Authors: Esra Ince

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As an important means of cultural transmission, cinema is an important resource for seeing cultural and social definitions, meanings and descriptions of people with disabilities. This study is aimed to reveal how disabled people are represented in the films selected from Turkish cinema. For this purpose, the films were examined with qualitative content analysis. The Goffmanian perspective was adopted in the study. The relationship between disability and stigma has been tried to be explained. How the disabled, which Goffman defines as a stigmatized group due to their differences, are represented in the cinema has been examined within the dramaturgy model. In the research, it was seen that the disabled characters took place in similar representations in different regions of dramaturgy. It has been seen that the films reinforce the negative discourse and behaviors by reflecting the prejudices, attitudes and behaviors in the society and continue to stigmatize disability.

Keywords: disability, Turkish cinema, Goffman, stigma

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Authors: Leah Plocharczyk, Matthew Conner

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This paper analyzes the relatively new trend of PSE programs which seek to provide education, vocational training, and a college experience to individuals with an intellectual and developmental disability (IDD). Specifically, the paper examines the degree of interaction between PSE programs and the libraries of their college campuses. Using ThinkCollege, a clearinghouse and advocate for PSE programs, the researchers identified 293 programs throughout the country. These were all contacted with an email survey asking them about the nature of their involvement, if any, with the academic libraries on their campus. Where indicated by the responses, the libraries of PSE programs were contacted for additional information about their programming. Responses to the survey questions were tabulated and analyzed quantitatively. Written comments were analyzed for themes which were then tabulated. This paper presents the results of this study. They show obvious preferences for library programming, such as group formal instruction, individual liaisons, embedded reference, and various instructional designs. These are discussed in terms of special education principles of mainstreaming, level of restriction, training demands and cost effectiveness. The work serves as a foundation for best practices that can advance the field.

Keywords: disability studies, instructional design, universal design for learning, assessment methodology

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Authors: Ahmed Assem Abd El Rahim

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BACKGROUND: Low back pain (LBP) is enormously common health problem& most of subjects experience it at some point of their life. Kinesio-taping is one of therapy methods introduced for studied cases with nonspecific low back pain. OBJECTIVES: to look at how Kinesio-taping affects studied cases with non-specific low back pain in terms of discomfort, range of motion, & back muscular strength. SUBJECTS: 40 mechanical LBP patients aged 20-40 years had been assigned haphazardly into two groups, They had been selected from outpatient clinic, KasrAl-AiniHospital, Cairo university. Methods: GroupA: 20 patients received the I-shape KT longitudinally & conventional physiotherapy program. Group B:20 studied cases received application of the KT Horizontally & conventional physiotherapy program. pain had been measured by visual analog scale, Range of motion had been measured by Roland Morris Disability Questionnaire (RMDQ), & strength had been measured by an isokinetic dynamometer before & after therapy. Therapy sessions had been three times weekly for four weeks. RESULTS: Groups (A & B) discovered decrease in pain& disability and rise in their flexion, extension ROM & peak torque of trunk extensor after end of 4 weeks of program. mean values of pain scale after therapy had been 3.7 and 5.04 in groups A & B. mean values of Disability scale after treatment had been 7.87.and 9.35 in groups A & B. mean values of ROM of flexion had been 28.06, and 24.53 in groups A & B. mean values of ROM of extension had been 13.43 & 10.73 in groups A & B. mean values of Peak torque of lumbar extensors were 65.43 and 63.22 in groups A & B. Though, participants who received the I-shape KT longitudinally as well as conventional physiotherapy program (group A), discovered more reduction in pain& disability and more improvement in ROM of flexion, extension, and Peak torque of lumbar extensors value (P<0.001) after therapy program CONCLUSION: Therapeutic longitudinal Kinesio-taping application with conventional physiotherapy will be more valuable than Therapeutic horizontal Kinesio-taping application with conventional physiotherapy when treating nonspecific low back pain studied cases.

Keywords: Kinesio taping, function, low back pain, muscle power

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Authors: Laetitia Fourie

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Dangerous myths and stereotypes contribute to the fact that persons living with albinism are amongst the most vulnerable groups in society. The prevalence of albinism varies around the world and the World Health Organization estimates that around 1 in 5000 people in Sub-Saharan Africa are affected by this genetic disorder. Persons who are living with the condition usually experience a lack of melanin in their skin, eyes and hair that results in possible physical impairments such as poor eyesight and skin cancers. Being affected by such disorders and consequently classified as an albino, give way for unequal treatment which ultimately requires safeguarding these persons against unfair discrimination - not only on the basis of their race and color (or lack thereof), but also on the basis of their disability. The Constitution of the Republic of South Africa provides that everyone is equal before the law and prohibits unfair discrimination on the grounds of race, color and disability. This right is given effect to by the Employment Equity Act, which strives to eliminate unfair discrimination on similar grounds within any employment policy or practice. An essential non-discrimination measure that can be implemented in the labor market to achieve equality is the duty of reasonable accommodation that rests upon employers. However, reasonable accommodation is only introduced as an affirmative action measure in order to provide equal employment opportunities to the identified designated groups who include black people (defined to include Indians, Chinese and Colored), women and people with disabilities. Even though this duty exists, South African law does not elaborate on the scope of the duty, except for a Disability Code, which does not hold the force of law. Furthermore, in respect of applying affirmative action measures to people with disabilities, the law does not elaborate on the meaning of disability. Considering that persons living with albinism will find it difficult to show that they are black or disabled in order to be acknowledged as part of the designated groups, their access to reasonable accommodation will be limited to a great extent. This paper will aim to illustrate to which extent South African law currently fails to implement its international obligations as a State Party to the Conventions of the United Nations, and how these failures should be corrected in order to serve the needs of all South Africans, including albinos.

Keywords: albinism, disability, equality, South Africa, United Nations

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Authors: Nasreen Abdulmannan

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Fetal abnormalities are categorized as a structural abnormality, non-structural abnormality, or a combination of both. Fetal structural abnormalities (FSA) include, but are not limited, to Down syndrome, congenital diaphragmatic hernia, and cleft lip and palate. These abnormalities can be detected in the first weeks of pregnancy, which is almost around 9 - 20 weeks gestational. Etiological factors for FSA are unknown; however, transmitted genetic risk can be one of these factors. Consanguineous marriage often referred to as inbreeding, represents a significant risk factor for FSA due to the increased likelihood of deleterious genetic traits shared by both biological parents. In a country such as the Kingdom of Saudi Arabia (KSA), consanguineous marriage is high, which creates a significant risk of children being born with congenital abnormalities. Historically, the practice of consanguinity occurred commonly among European royalty. For example, Great Britain’s Queen Victoria married her German first cousin, Prince Albert of Coburg. Although a distant blood relationship, the United Kingdom’s Queen Elizabeth II married her cousin, Prince Philip of Greece and Denmark—both of them direct descendants of Queen Victoria. In Middle Eastern countries, a high incidence of consanguineous unions still exists, including in the KSA. Previous studies indicated that a significant gap exists in understanding the lived experiences of Saudi women dealing with an FSA-complicated pregnancy. Eleven participants were interviewed using a semi-structured interview format for this qualitative phenomenological study investigating the lived experiences of pregnant Saudi women carrying a child with FSA. This study explored the gaps in current literature regarding the lived experiences of pregnant Saudi women whose pregnancies were complicated by FSA. In addition, the researcher acquired knowledge about the available support and resources as well as the Saudi cultural perspective on FSA. This research explored the lived experiences of pregnant Saudi women utilizing Giorgi’s (2009) approach to data collection and data management. Findings for this study cover five major themes: (1) initial maternal reaction to the FSA diagnosis per ultrasound screening; (2) strengthening of the maternal relationship with God; (3) maternal concern for their child’s future; (4) feeling supported by their loved ones; and (5) lack of healthcare provider support and guidance. Future research in the KSA is needed to explore the network support for these mothers. This study recommended further clinical nursing research, nursing education, clinical practice, and healthcare policy/procedures to provide opportunities for improvement in nursing care and increase awareness in KSA society.

Keywords: fetal structural abnormalities, psychological distress, health provider, health care

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Authors: Afeez Kolawole Shittu

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Democracy as practiced across the globe is sustained with the increase participation of all eligible voters irrespective of class, race, colour, and disabilities. However, there is a perception within the contemporary African society that people with disability (PWDs) belongs to charity and welfare. This is exacerbated with little understanding among African counties including Nigeria that persons with disability have fundamental rights inevitably rooted in the constitution. This significant viewpoint has continued to militate against the social inclusion of persons with disabilities in various aspects of societal lives including their political participation It is instructive to note that the political right of PWDs has been protected by various international conventions. Article 29 of the United Nations Convention on the Rights and Dignities for Persons with Disability (CRPD) guaranteed the participation of persons with disability in the political process. Domesticating and ratification of this right has been a challenge for many African countries including Nigeria. Against the backdrop, the Independent National Electoral Commission (INEC), the body saddled with the responsibility of conducting elections in Nigeria provided forum for the participation of persons with disability in election through implementations of electoral act. Section 56 (1) and (2) of the 2010 Electoral Act (as amended) provide for voting participation of persons with disability. This study examines the implementation of the electoral act and how it impacts the voting participation of persons with disability vis-à-vis other challenges affecting the participation of PWDs in electoral process in Nigeria’s 2019 general election. This paper draws on mixed method in sourcing relevant information from the respondents. Interview will be conducted among INEC officials, Civil Society Organisations, Joint National Association of Persons with Disability (JONAPWD). Questionnaire and Focus Group Discussion will be held among different forms of PWDs. The data will be analysed using appropriate descriptive statistics and inferential statistics, as well as thematic content analysis. The study will enlighten understanding on the awareness of the political rights of PWDs as well as improving their electoral participation for sustainable democracy in Nigeria, Africa’s most populous country.

Keywords: electoral reforms, voting participation, persons with disabilities

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Authors: Mafunda Esther

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The paper seeks to find out and document the impact of culture and religion on disability, specifically language impairment and health care seeking practices of the Shona people. Its main objectives are to explore the cultural and religious beliefs that affect the utilization of rehabilitation services in a rural community in Zimbabwe. The other objective of the paper is to describe how language impairment is presented and understood by people living in a Zimbabwean rural area. The research is qualitative interpretive phenomenological research, and it utilizes the case study approach using semi structured interviews and focus group discussions. Results from the research established that religious and cultural beliefs determine how the Shona people view disability, and this guides their health care seeking practices. The research is important since communication disorders occur in populations worldwide though they are not always recognized as such. The lack of recognition of and the attitudes toward speech and languages disorders, as well as the beliefs about the causes of such disorders, affect people's attitudes toward the treatment of the disorders.

Keywords: culture, religion, disability, language impairment

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Authors: Sabitra Kaphle, Rebecca Fanany, Jenny Kelly

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Australia welcomes significant numbers of humanitarian arrivals every year with the commitment to provide equal opportunities and the resources required for integration into the new society. Over the last two decades, more than 24,000 South Sudanese people have come to call Australia home. Most of these refugees experienced several challenges whilesettlinginto the new social structures and service systems in Australia. The aim of the research is to explore the factors influencing social and cultural integration of South Sudanese refugees who have settled in Australia. Methodology: This studyused a phenomenological approach based on in-depth interviews designed to elicit the lived experiences of South Sudanese refugees settled in Australia. It applied the principles of narrative ethnography, allowing participants an opportunity to speak about themselves and their experiences of social and cultural integration-using their own words. Twenty-six participants were recruited to the study. Participants were long-term residents (over 10 years of settlement experience)who self-identified as refugees from South Sudan. Participants were given an opportunity to speak in the language of their choice, and interviews were conducted by a bilingual interviewer in their preferred language, time, and location. Interviews were recorded and transcribed verbatim and translated to Englishfor thematic analysis. Findings: Participants’ experiences portray the complexities of integrating into a new society due tothe daily challenges that South Sudaneserefugees face. Themes emerged from narrativesindicated that South Sudanese refugees express a high level of association with a Sudanese identity while demonstrating a significant level of integration into the Australian society. Despite this identity dilemma, these refugees show a high level of consensus about the experiencesof living in Australia that is closely associated with a group identity. In the process of maintaining identity andsocial affiliation, there are significant inter-generational cultural conflicts that participants experience in adapting to Australian society. It has been elucidated that identityconflict often emerges centeringon what constitutes authentic cultural practice as well as who is entitled to claim to be a member of the South Sudanese culture. Conclusions: Results of this study suggest that the cultural identity and social affiliations of South Sudanese refugees settling into Australian society are complex and multifaceted. While there are positive elements of theirintegration into the new society, inter-generational conflictsand identity confusion require further investigation to understand the context that will assist refugees to integrate more successfully into their new society. Given the length of stay of these refugees in Australia, government and settlement agencies may benefit from developing appropriate resources and process that are adaptive to the social and cultural context in which newly arrived refugees will live.

Keywords: cultural integration, inter-generational conflict, lived experiences, refugees, South sudanese

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Authors: Tatiani D. Mousoura

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Specific learning disability (SLD) in higher education has been partially explored in Greece so far. Moreover, opinions on professional perspectives for university students with SLD, is scarcely encountered in Greek research. The perceptions of the hidden character of SLD along with the university policy towards it and professional perspectives that result from this policy have been examined in the present research. This study has applied the paradigm of a Greek Tertiary Pedagogical Education Department (Early Childhood Education). Via mixed methods, data have been collected from different groups of people in the Pedagogical Department: students with SLD and without SLD, academic staff and administration staff, all of which offer the opportunity for triangulation of the findings. Qualitative methods include ten interviews with students with SLD and 15 interviews with academic staff and 60 hours of observation of the students with SLD. Quantitative methods include 165 questionnaires completed by third and fourth-year students and five questionnaires completed by the administration staff. Thematic analyses of the interviews’ data and descriptive statistics on the questionnaires’ data have been applied for the processing of the results. The use of medical terms to define and understand SLD was common in the student cohort, regardless of them having an SLD diagnosis. However, this medical model approach is far more dominant in the group of students without SLD who, by majority, hold misconceptions on a definitional level. The academic staff group seems to be leaning towards a social approach concerning SLD. According to them, diagnoses may lead to social exclusion. The Pedagogical Department generally endorses the principles of inclusion and complies with the provision of oral exams for students with SLD. Nevertheless, in practice, there seems to be a lack of regular academic support for these students. When such support does exist, it is only through individual initiatives. With regards to their prospective profession, students with SLD can utilize their personal experience, as well as their empathy; these appear to be unique weapons in their hands –in comparison with other educators− when it comes to teaching students in the future. In the Department of Pedagogy, provision towards SLD results sporadic, however the vision of an inclusive department does exist. Based on their studies and their experience, pedagogy students with SLD claim that they have an experiential internalized advantage for their future career as educators.

Keywords: specific learning disability, SLD, dyslexia, pedagogy department, inclusion, professional role of SLDed educators, higher education, university policy

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Authors: Alapa Peters Odugbo

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The remarkable but fascinatingly intricate book 'The Lives of Jessie Sampter', by Sarah Imhoff, which describes Jessie Sampter's three different lives as a queer, a disabled person, and a Zionist, served as the main inspiration for this work. Her second chapter of Imhoff, which covers disability in-depth, inspired the focus of my study. This paper critically explores how culture, religion, and medicine contribute to and sustain discriminatory practices against people with disabilities in Nigeria. These practices include continued and often unchallenged stigmatization, unequal treatment, and denial of basic social services, employment prospects, and fundamental human rights. The paper makes crucial recommendations to help combat and eliminate these practices and negative perceptions toward people with disabilities in Nigeria, as well as to safeguard and promote their interests and rights.

Keywords: disability, culture, religion, medicine

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Authors: Grzegorz Kubinski

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The proposed paper is focused on forms of identity expression in people with disabilities (PWD) in the social networks like Instagram. Theoretical analysis widely proposes using the new media as an assistive tool for improving wellbeing and labour activities of PWD. This kind of use is definitely important and plays a key role in all social inclusion processes. However, Instagram is not a place where PWD only express their own problems, but in the opposite, allows them to construct a new definition of disability. In the paper, the problem how this different than a classical approach to disability is created by PWD will be discussed. This issue will be scrutinized mainly in two points. Firstly, the question of how disability is changed by other everyday activities, like fashion or sport, will be described. Secondly, and this could be seen as more important, the point how PWD redefining their bodies creating a different form of aesthetic will be presented. The paper is based on content analysis of Instagram accounts. About 20 accounts created by PWD were analyzed for 6 month period, taking into account elements like photos, comments and discussions. All those information were studied in relation to 'everyday life' category and 'aesthetic' category. Works by T. Siebers, L. J. Davis or R. McRuer were used as theoretical background. Conclusions and interpretations presented in the proposed paper show that the Internet can be used by PWD not only as prosthetic and assistive tools. PWD willingly use them as modes of expression their independence, agency and identity. The paper proposes that in further research this way of using the Internet communication by PWD should be taken into account as an important part of the understanding of disability.

Keywords: body, disability, identity, new media

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Authors: Sidra Jawed

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The accessibility constructs and the body privilege discourse has been a major problem while dealing with health inequities and inaccessibility. The inherent problem in this arbitrary view of disability is that disability would never be the productive way of living. For past thirty years, disability activists have been working to differentiate ‘impairment’ from ‘disability’ and probing for more understanding of limitation imposed by society, this notion is ultimately known as the Social Model of Disability. The vulnerable population as disability community remains marginalized and seen relentlessly fighting to highlight the importance of social factors. It does not only constitute physical architectural barriers and famous blue symbol of access to the healthcare but also invisible, intangible barriers as attitudes and behaviours. Conventionally the idea of ‘disability’ has been laden with prejudiced perception amalgamating with biased attitude. Equity in contemporary setup necessitates the restructuring of organizational structure. Apparently simple, the complex interplay of disability and contemporary healthcare set up often ends up at negotiating vital components of basic healthcare needs. The role of society is indispensable when it comes to people with disability (PWD), everything from the access to healthcare to timely interventions are strongly related to the set up in place and the attitude of healthcare providers. It is vital to understand the association between assumptions and the quality of healthcare PWD receives in our global healthcare setup. Most of time the crucial physician-patient relationship with PWD is governed by the negative assumptions of the physicians. The multifaceted, troubled patient-physicians’ relationship has been neglected in past. To compound it, insufficient work has been done to explore physicians’ perspective about the disability and access to healthcare PWD have currently. This research project is directed towards physicians’ perspective on the intersection of health and access of healthcare for PWD. The principal aim of the study is to explore the perception of disability in family medicine physicians, highlighting the underpinning of medical perspective in healthcare institution. In the quest of removing barriers, the first step must be to identify the barriers and formulate a plan for future policies, involving all the stakeholders. There would be semi-structured interviews to explore themes as accessibility, medical training, construct of social model and medical model of disability, time limitations, financial constraints. The main research interest is to identify the obstacles to inclusion and marginalization continuing from the basic living necessities to wide health inequity in present society. Physicians point of view is largely missing from the research landscape and the current forum of knowledge with regards to physicians’ standpoint. This research will provide policy makers with a starting point and comprehensive background knowledge that can be a stepping stone for future researches and furthering the knowledge translation process to strengthen healthcare. Additionally, it would facilitate the process of knowledge translation between the much needed medical and disability community.

Keywords: disability, physicians, social model, accessibility

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Authors: Ladda Thiamwong, Renata Komalasari

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Falls are the leading cause of disability and hospitalization in low-income older adults. Fear of falling is present in 20% to 85 % of older adults and has been identified as an independent risk factor of fall risk, activity restriction, and loss of independence. About 12% of American older adults have subjective cognitive decline. Cognitive impairment is also an established factor of fall risk. However, it is unclear whether measures of fear of falling and subjective cognitive decline have the greatest association with fall risk in low-income older adults. The aim of this study was to evaluate the association between fear of falling, subjective cognitive decline-functional performance (SCD-FP), and fall risk using simple screening tools. In this cross-section study, we collected data from community-dwelling older adults 60 years or older in low-income settings in Central Florida, and 86 participants were included in the data analysis. Fear of falling was assessed by the Short Fall Efficacy Scale- International (Short FES-I) with seven items. Subjective cognitive decline-functional performance (SCD-FP) was assessed by a self-reported experience of worsening or more frequent confusion or memory loss in the past 12 months and its functional implications. Fall risk was evaluated by the Centers for Disease Control and Prevention (CDC)'s Stay Independent checklist with 12 items. The majority of participants were female, and more than half of the participants were African American. More than half of the participants had a higher school degree or higher, and less than 20% had no financial problems. Less than 30% of the participants perceived their general health as very good- excellent. More than half of the participants lived alone, and less than 15% lived with a partner or spouse. About 60% of the participants had hypertension, 40% had diabetes, 16% had cancer, and 50% had arthritis. About 30% of the participants had difficulty walking up ten steps without resting, more than 40% felt unsteady when walking, and 30% had been advised to use a cane or walker to get around safely. Regression analysis showed that fall risk was associated with fear of falling ( = .524, p <.001) and subjective cognitive decline-functional performance ( = .465, p =.027). The structure coefficient showed that fear of falling (rs2 = .922) was a stronger predictor of fall risk than subjective cognitive decline-functional performance (rs2= .200). Fear of falling and subjective cognitive decline-functional performance are growing public health issues, and addressing those issues is a public priority. Proactive screening for fear of falling and subjective cognitive decline-functional performance is critical in fall prevention. A combination of all three self-reported tools (Short FES-I, SCD-FP, and CDC's Stay Independent checklist) takes less than 5 minutes to complete. Primary care providers or public health professionals should consider including these tools to screen fear of falling and subjective cognitive decline-functional performance as part of fall risk assessment, especially in low-income settings. Thus, encouraging older adults and healthcare professionals to discuss fear of falling, subjective cognitive decline, and fall risk during routine medical office visits.

Keywords: falls, fall risk, fear of falling, cognition, subjective cognitive decline, low-income, older adults, community, screening, nursing, primary care

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Authors: Daniel Suárez, Jesús Tomas, Sandra Sendra, Sandra Viciano-Tudela, Luis Felipe Calle, Javier Urios, Jaime Lloret

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Our study is to develop a tool for the mobile phone to an assessment of body damage or determination of the degree of disability. This is a field of action of legal medicine and insurance with obvious economic implications. Those people who have suffered an accident or bodily harm demand a quantification of it. The assessment of bodily harm or disability by the expert medical professional is not exempt from complexity. Sometimes it is difficult to quantify pain; other times, the doctor faces simulators or exaggerators, and on many occasions, it is difficult to remember the extensive tables of scales whose details are complex to remember and apply. We present a tool, as a mobile application, that allows entering the sociodemographic date of the patient as well as the characteristics of the accident suffered by the person. With these preliminary data and introducing bodily damage, an approximate calculation of the compensation that the injured party should receive can be made. One of the results of this study is that it allows calculating joint mobility angles without the need to use a goniometer.

Keywords: mobile tool, body damage, personal injury and disability, telemedicine

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Authors: Sarah Faulkner, Patrick Faulkner, Caroline Ellison

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Improved mental and physical health, community connection, and increased life satisfaction has been strongly associated with bike riding for those with and without a disability. However, much evidence suggests that people living with a disability face increased barriers to engaging in cycling compared to members of the general population. People with an intellectual disability often live more sedentary and socially isolated lives that negatively impact their mental and physical health, as well as life satisfaction. This paper is based on preliminary findings from a three-year intervention cycling project funded by the South Australian Government. The cycling project was developed in partnership with community stakeholders that provided weekly instruction, training, and support to individuals living with intellectual disabilities to increase their capacity in cycling. This project aimed to support people living with intellectual disabilities to foster and facilitate improved physical and mental health, confidence, and independence and enhance social networking through their engagement in community cycling. The program applied principles of social role valorisation (SRV) theory as its guiding framework. Preliminary data collected is based on qualitative interviews with over 50 program participants, results from two participant wellness questionnaires, as well as a perceptually regulated exercise test administered throughout the project implementation. Preliminary findings are further supplemented with ethnographic analyses by the researchers who took a phenology of life experience approach. Preliminary findings of the program suggest a variety of social motivations behind participants' desire to learn cycling that acknowledges previous barriers to engagement and cycling’s role to address feelings of loneliness and social isolation. Meaningful health benefits can be achieved as demonstrated by increases in predicted V02 max measures, suggesting that physical intervention can not only improve physical health outcomes but also provide a variety of other social benefits. Initial engagement in the project has demonstrated an increase in participants' sense of confidence, well-being, and physical fitness. Implementation of the project in partnership with a variety of community stakeholders has identified a number of critical factors and processes necessary for future service replication, sustainability, and success. Findings from this intervention study contribute to the development of a knowledge base on how best to support individuals living with an intellectual disability to partake in bike riding and increase positive outcomes associated with their capacity building, social interaction, increased physical activity, physical health, and mental well-being. The initial findings of this study provide critical academic insights into the social and physical benefits of cycling for people living with a disability, as well as practical advice for future human service applications.

Keywords: cycling, disability, social inclusion, capacity building

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Authors: Scott Caizley

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Widening participation amongst state schooled and British and Minority Ethnic (BME) students in UK conservatoires throughout the past years has persisted to remain at an all time low despite major efforts to increase access for those from underrepresented backgrounds. In the academic year of 2017/18, two of the UK’s leading music conservatoires recruited less state school students than Oxbridge. Whilst conservatories face further public stigmatisation and heavy financial penalties for failing to meet government benchmarks; there appears to be a more costly outcome to this crisis. This of course, is the lack of sociocultural diversity, which is perpetuated both within the conservatoire sector and the classical music industry. This research investigates the lived experiences of former state-schooled students who attended a UK music conservatoire. Given the participant’s underrepresented status, the research seeks to answer whether or not the students are fitting in or standing out within the conservatoire environment. The research will explore the findings through a Bourdieusian contextual framework with hope of generating a wealth of new practises to the field of Higher Music Education. It is through illuminating the underrepresented voices within these elite spaces, which could aid future research and policy to help tackle the diversity dilemma and give classical music the social and cultural renewal it so desperately needs.

Keywords: classical music, lived experiences, higher music education, Bourdieusian

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Authors: Al Muneef Maha, Al Tamimi Dana

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Introduction: Child maltreatment was proven to negatively impact children’s and adolescent’s academic performances; showing less academic achievements, problems completing homework assignments, and was marginally associated with being frequently absent from school (1). Objectives: To identify the impact of child maltreatment on school performance among adolescents in National Guard Schools. Materials and Methods: The study was conducted at National Guard schools in Riyadh. Students aged 12-19 years were invited to participate. Participants (N=674) completed the survey instrument which included demographics, exposure to different types of abuse, and overall level of academic performance. Results: Participants’ mean age was 15.6±1.6 years and males (53%). Ninety-five percent lived with both parents, 2% with single parent, and 3% with step parents. Four percent lived with alcoholic parents or guardians, and 7% have lived with a family member who has been arrested or imprisoned. Poor performance (failure in exam) were more likely among the students who lived with alcoholics vs. non-alcoholics (33% vs. 11%, p<0.01), imprisoned family member vs. non-imprisoned (26% vs. 11%, p<0.01), psychologically abused vs. not abused (21% vs. 10%, p<0.01), physically abused vs. not abused (19% vs. 9%, p<0.01). Predisposing factors to poor performance in school included living with alcoholic parents or guardians (OR=2.8, CI=1.1-6.7), psychologically abused (OR=1.7, CI=1.0-3.0), and physically abused (OR=1.7, CI=1.0-2.8). Conclusions: The results suggest that child maltreatment may adversely impact school performance. These findings highlight the importance of increasing the awareness about the impact of child maltreatment on school performance among families, schools, and the community. Recommend to the Ministry of Education to consider counseling of students with poor performance due to adverse child experiences or maltreatment.

Keywords: child abuse, child maltreatment, school performance, Saudi Arabia

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Authors: Marlene Rosa, Susana Lopes

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Board games have been used for different purposes in geriatric care, demonstrating good results for health in general. However, there is not a conceptual framework that can help professionals and researchers in this area to design intervention programs or to think about future studies in this area. The aim of this study was to provide a pilot collection of board games’ serious purposes in geriatric care, using a WHO framework for health and disability. Study cases were developed in seven geriatric residential institutions from the center region in Portugal that are included in AGILAB program. The AGILAB program is a serious game-based method to train and spread out the implementation of board games in geriatric care. Each institution provides 2-hours/week of experiences using TATI Hand Game for serious purposes and then fulfill questions about a study-case (player characteristics; explain changes in players health according to this game experience). Two independent researchers read the information and classified it according to the International Classification for Functioning and Disability (ICF) categories. Any discrepancy was solved in a consensus meeting. Results indicate an important variability in body functions and structures: specific mental functions (e.g., b140 Attention functions, b144 Memory functions), b156 Perceptual functions, b2 sensory functions and pain (e.g., b230 Hearing functions; b265 Touch function; b280 Sensation of pain), b7 neuromusculoskeletal and movement-related functions (e.g., b730 Muscle power functions; b760 Control of voluntary movement functions; b710 Mobility of joint functions). Less variability was found in activities and participation domains, such as purposeful sensory experiences (d110-d129) (e.g., d115 Listening), communication (d3), d710 basic interpersonal interactions, d920 recreation and leisure (d9200 Play; d9205 Socializing). Concluding, this framework designed from a brief gamed-based experience includes mental, perceptual, sensory, neuromusculoskeletal, and movement-related functions and participation in sensory, communication, and leisure domains. More studies, including different experiences and a high number of users, should be developed to provide a more comprehensive ICF framework for game-based experiences in geriatric care.

Keywords: board game, aging, framework, experience

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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: Aisling De Paor

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Scientific and technological developments are driving genetics and genetic technologies into the public sphere. Scientists are making genetic discoveries as to the make up of the human body and the cause and effect of disease, diversity and disability amongst individuals. Technological innovation in the field of genetics is also advancing, with the development of genetic testing, and other emerging genetic technologies, including gene editing (which offers the potential for genetic modification). In addition to the benefits for medicine, health care and humanity, these genetic advances raise a range of ethical, legal and societal concerns. From an ethical perspective, such advances may, for example, change the concept of humans and what it means to be human. Science may take over in conceptualising human beings, which may push the boundaries of existing human rights. New genetic technologies, particularly gene editing techniques create the potential to stigmatise disability, by highlighting disability or genetic difference as something that should be eliminated or anticipated. From a disability perspective, use (and misuse) of genetic technologies raise concerns about discrimination and violations to the dignity and integrity of the individual. With an acknowledgement of the likely future orientation of genetic science, and in consideration of the intersection of genetics and disability, this paper highlights the main concerns raised as genetic science and technology advances (particularly with gene editing developments), and the consequences for disability and human rights. Through the use of traditional doctrinal legal methodologies, it investigates the use (and potential misuse) of gene editing as creating the potential for a unique form of discrimination and stigmatization to develop, as well as a potential gateway to a form of new, subtle eugenics. This article highlights the need to maintain caution as to the use, application and the consequences of genetic technologies. With a focus on the law and policy position in Europe, it examines the need to control and regulate these new technologies, particularly gene editing. In addition to considering the need for regulation, this paper highlights non-normative approaches to address this area, including awareness raising and education, public discussion and engagement with key stakeholders in the field and the development of a multifaceted genetics advisory network.

Keywords: disability, gene-editing, genetics, law, regulation

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Authors: Amy Atkinson

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Teacher burnout and dissatisfaction is a concerning challenge for visual art (VA) programs within the western (Canadian) educational context, however VA programs who offer the International Baccalaureate (IB) curriculum within international schools are thriving. The purpose of this research was to investigate the experiences of Canadian-educated seasoned VA teachers within a range of curriculums, administrative systems and locations focusing on issues related to the VA teaching experience such as viability of the artist-teacher relationship, teaching satisfaction and teacher burnout. Research was conducted using an auto-ethnography approach coupled with a comparative case study method using in-depth interviews. Insights were uncovered into VA teacher’s lived experience, values and decisions, occupational ideology, cultural knowledge, and perspectives. Research for creation methods were explored to develop a creative narrative to amplify teacher voice; endeavouring to make the obscure vivid, empathy possible, direct attention to individuality and locate the universal. Case study results sustain ethnographic observations revealing that VA teachers are experiencing more efficacy, satisfaction and success, with less burn out within the international school/IB context.

Keywords: international baccalaureate, autoethnography, teacher voice, visual arts

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

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

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

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Authors: Hawa Khan

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Autism is a complex disorder related to abnormalities in the development of brain structure and neurological function and a new phenomenon which is epidemically on the increase. The Muslim community, with its profound commitment to the all-encompassing Islamic precedence, views all phenomena in the light of religious imperatives. How autism is understood and treated in these communities is key to successful inclusive services. Moreover, parents mentioned their Islamic faith as a coping mechanism for the challenges they faced while caring for their child. This study utilises interpretative phenomenology analysis as a methodology that seeks to interpret the meaning the participants make of their experiences, which extends descriptive analysis. Semi-structured interviews were conducted with 5 family units that included fathers, mothers, grandparents, and siblings. In the preliminary stage, this study found families give high importance of accessible Islamic education for their child and questioning the accountability of the child who might not be able to follow the Islamic way of life entirely or understand the concept of Allah. Moreover, the families expressed their beliefs in traditional and religious treatment as an effective way to treat and cure autism. This poses a major barrier between families seeking support and professionals providing services. Consequentially, it can also result in a low uptake of mainstream services from the Muslim community. Exploring the lived experiences of parents from the Muslim community and how ASD is conceptualised in this community could have implications for improved and effective home, community, and service collaboration.

Keywords: autism spectrum disorder, Islamic education, religious beliefs, mainstream services

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Authors: Melissa Angus Baboun

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Utilizing a Critical Discourse Analysis (CDA) methodology and a theoretical framework based on disability studies, how Jamaican and Trinidadian newspapers discussed issues relating to the Deaf community were examined. The term deaf was inputted into the search engine tool of the online website for the Jamaica Observer and the Trinidad & Tobago Guardian. All 27 articles that contained the term deaf in its content and were written between August 1, 2017 and November 15, 2017 were chosen for the study. The data analysis was divided into three steps: (1) listing and analysis instances of metaphorical deafness (e.g. fall on deaf ears), (2) categorization of the content of the articles into the models of disability discourse (the medical, socio-cultural, and superscrip models of disability narratives), and (3) the analysis of any additional data found. A total of 42% of the articles pulled for this study did not deal with the Deaf community in any capacity, but rather instances of the use of idiomatic expressions that use deafness as a metaphor for a non-physical, undesirable trait. The most common idiomatic expression found was fall on deaf ears. Regarding the models of disability discourse, eight articles were found to follow the socio-cultural model, two were found to follow the medical model, and two were found to follow the superscrip model. The additional data found in these articles include two instances of the term deaf and mute, an overwhelming use of lower case d for the term deaf, and the misuse of the term translator (to mean interpreter).

Keywords: deafness, disability, news coverage, Caribbean newspapers

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Authors: Mafalda Moreira, Diana Alba, Inês Paiva Ferreira, Rita Calejo, Ana Rita Soares, Leonilde Machado

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Intellectual disability (ID) is characterized by deficits in intellectualfunctioningassociatedwithalterations in the adaptive behaviour, whose onset is inthedevelopmentalperiod. Itaffects 3% of the population, ofwhich 10% have a geneticaetiology. One of those causes isAlwadeiSyndrome, with 3 cases describedworldwide. It results from a homozygous nonsense mutation in theRUSC2 gene andisassociatedwithintellectualdisabilityanddysmorphic facialfeatures. Theauthorsreportthe case of a 5-year-old-boy, born to a healthymotherafter a full-termuneventfulpregnancy, thatwasreferred to Neurodevelopmentalconsultationdue toglobal developmentaldelay. Familyhistoryrevealedlearningdifficulties in the paternal brotherhood. Milddismorphicfeatureswereevidentsuch as darkinfraorbitalregion, low-set ears, beakednose, retrognathism, high-archedpalateandjointhyperlaxity. WechslerIntelligenceScale for Children III fullscaleIQ quoted 61. Karyotypeandchromosomalmicroarrayanalysiswerenormal, as well as the fragile X molecular study. DNA sequencingwasthenperformedandallowedtheidentificationof amutation in the RUSC2 gene. Theetiologicaldiagnosisof ID remains unknown in up to 80% of cases, creatinguncertainty in children’sfamilies. Theadvances in DNA sequencingtechnologieshaveincreasedourknowledgeofthegeneticdiseasesinvolved, as theAlwadeisyndromewasonlydescribedsince 2016. Thegeneticdiagnosisof ID allowsfamilygeneticcounselingandenablesthedevelopmentof target therapeutic approaches.

Keywords: intellectual disability, genetic aetiology, alwadei syndrome, RUSC2

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Authors: Norita Ahmad, Reza Barkhi, Xiaobo Xu

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We design an experimental study to learn about the cognitive implications of the use of avatars in a Virtual World (VW) (i.e., Second Life). The results support our proposed model, where a positive flow experience with VW influences the attitude towards VW, in turn influencing intention to use VW. Furthermore, VW flow experience can itself be impacted by perceived peer influence, familiarity with VW, and personality of the individuals behind the avatars in VW.

Keywords: avatar, flow experience, personality type, second life, virtual world

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Authors: Christine Eickhoff, Alyssa Adams, Alaine Duncan

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The Washington, DC Veterans Affairs Medical Center (DC VAMC) offers complementary and integrative health (CIH) services such as acupuncture, yoga, meditation, and nutrition education through a coordinated outpatient clinic. The primary population utilizing CIH services are veterans with chronic pain. Acupuncture is one of the most popular of the CIH services available at the DC VAMC. As interest and availability grows, it is important to measure health outcomes associated with CIH service utilization. The purpose of this study was to investigate pain and mental health outcomes for veterans with chronic pain enrolled in individual acupuncture services in the DC VAMC. Veterans at the DC VAMC with self-identified chronic pain and no prior acupuncture experience were recruited for the study (n=70). Veterans were referred for services by a medical provider and completed baseline assessments at the program orientation prior to participating in any CIH services. Veterans received four individual, full-body acupuncture appointments within four weeks of study enrollment. After the first month, participants were scheduled for six appointments that occurred every two weeks and then eight more sessions that were scheduled one month apart. Follow-up assessments were administered at 2, 4, 6, 8, and 12 months. The findings reported will include completed time points at two and four months. Measures include a demographics survey, the Measure Yourself Medical Outcome Profile-2 (MYMOP-2), The Beck Depression Inventory (BDI-II), the Defense Veterans Pain Rating Scale (DVPRS), and the Pain Disability Questionnaire (PDQ). In this sample, 67% identified a pain condition as their primary health concern. Between baseline and two-month follow-up, there were significant improvements in participants’ primary health concern (MYMOP-2 p=0.010), general wellbeing (MYMOP-2 p=0.011), and a significant decrease in the use of medication (MYMOP-2 p<0.000). Between 2 and 4-month follow-up, pain disability (PDQ p=0.035), pain rating (DVPRS p=0.027), and depression (BDI-II p=0.003) significantly improved. Preliminary findings indicate that individual acupuncture therapy can be effective at improving health outcomes, well-being, and decreasing medication use in U.S. military veterans with chronic pain. Findings also suggest that individual acupuncture therapy can improve pain ratings, pain disability, and depression in veterans with chronic pain.

Keywords: acupuncture, chronic pain, depression, integrative health, medication use, military, pain, veterans, wellbeing

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Authors: P. Maheshwari, M. Brindavan

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The present research aimed to study the level of socio-emotional skills and perceived self-efficacy of children with learning disability. The study further investigated the relationship between the levels of socio-emotional skills, perceived self-efficacy and academic achievement of children with learning disability. The sample comprised of 40 children with learning disability as their primary condition, belonging to middle or upper middle class, living with both the parents, residing in Mumbai. Purposive or Judgmental and snowball sampling technique was used to select the sample for the study. Proformas in the form of questionnaires were used to obtain the background information of the children with learning disability. A self-constructed Child’s Perceived Self-Efficacy Assessment Scale and Child’s Social and Emotional Skills Assessment Scale was used to measure the level of child’s perceived self-efficacy and their level of social and emotional skill respectively. Academic scores of the child were collected from the child’s parents or teachers and were converted into a percentage. The data was analyzed quantitatively using SPSS. Spearman rho or Pearson Product Moment correlation was used to ascertain the multiple relationships between child’s perceived self-efficacy, child’s social and emotional skills and child’s academic achievement. The findings revealed majority (27) of the children with learning disability perceived themselves having above average level of social and emotional skills while 13 out of 40 perceived their level of social and emotional skills at an average level. Domain wise analyses revealed that, in the domain of self- management (26) and relationship skills (22) more number of the children perceived themselves as having average or below average level of social and emotional skills indicating that they perceived themselves as having average or below average skills in regulating their emotions, thoughts, and behaviors effectively in different situations, establishing and maintaining healthy and rewarding relationships with diverse groups and individuals. With regard to perceived self-efficacy, the majority of the children with learning disability perceived themselves as having above average level of self-efficacy. Looking at the data domain wise it was found that, in the domains of self-regulated learning and emotional self-efficacy, 50% of the children perceived themselves at average or below average level, indicating that they perceived themselves as average on competencies like organizing academic activities, structuring environment to make it conducive for learning, expressing emotions in a socially acceptable manner. Further, the correlations were computed, and significant positive correlations were found between children’s social and emotional skills and academic achievement (r=.378, p < .01), and between children’s social and emotional skills and child’s perceived self-efficacy (r = .724, p < .01) and a positive significant correlation was also found between children’s perceived self-efficacy and academic achievement (r=.332, p < .05). Results of the study emphasize on planning intervention for children with learning disability focusing on improving self-management and relationship skills, self-regulated learning and emotional self-efficacy.

Keywords: learning disability, social and emotional skills, perceived self-efficacy, academic achievement

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Authors: Claudia Valderrama-Ulloa, Cristian Schmitt, Juan Pablo Marchetti, Viviana Bucarey

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Access to adequate housing is a fundamental human right and a crucial factor for health. Housing should be inclusive, accessible, and able to meet the needs of all its inhabitants at every stage of their lives without hindering their health, autonomy, or independence. This article addresses the importance of designing housing for people with disabilities, which varies depending on individual abilities, preferences, and cultural considerations. Based on the components of the International Classification of Functioning, Disability and Health, wheelchair users, little people (achondroplasia), children with autism spectrum disorder and Down syndrome were characterized, and six domains of activities related to daily life inside homes were defined. The article describes the main barriers homes present for this group of people. It proposes a list of architectural and design aspects to reduce barriers to housing use. The aspects are divided into three main groups: space management, building services, and supporting facilities. The article emphasizes the importance of consulting professionals and users with experience designing for diverse needs to create inclusive, safe, and supportive housing for people with disabilities.

Keywords: achondroplasia, autism spectrum disorder, disability, down syndrome, wheelchair user

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Authors: Sankalpa Satapathy

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The stigma attached to disability is very high in India and given its patriarchal society women and their interests have always been pushed to the background. The identity of disabled women is compromised under the social construction of disability which lowers their self-esteem and hampers their development. Disability policies in India have focused on provision of educational and employment opportunities to make them economically productive members of the society. This preoccupation with the materialistic spheres of lives of the disabled has led to a neglect of the private sphere concerning intimate social relationships and motherhood. This paper seeks to bring to forefront the private lives of disabled women. Semi-structured in-depth interviews were conducted with twenty seven women with physical disability (congenital/acquired) from Odisha, a state in India. Sampling was done in a manner to include women from various strata of the society to allow meaningful analysis. In a society where paramount importance is attached to wifehood and motherhood, the chances of marriage for disabled women were very low compared to disabled men. Majority believed that marriage and having a family was meant for non disabled women and had decided against getting married. Socialization process was found to be a major factor in determining the ideas and aspirations of disabled women. They were clearly sidelined by their families on the issue of marriage. Education and employment levels did not seem to increase the appeal of disabled women to prospective suitors. But not all the women interviewed were closed to the idea of intimate relationships and marriage. Disabled women who were married or hoped to get married in future were found to have a better body image and greater self motivation. It is interesting to understand the means by which these women, who have been brought up to internalize ideas of their unattractiveness, undesirability, asexuality and inability to care, established identities which have so long been denied to them. With these stories of personal triumphs an attempt is made for reclamation of private spheres which have been abandoned by disability policies and make them gender sensitive.

Keywords: disability, gender, marriage, relationships

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