Search results for: disability and health (ICF)

Authors: Julia Córdoba

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People are not completely autonomous, as we live in society; therefore, people could be defined as relationally dependent. The lack, decrease or loss of physical, psychological and/or social interdependence due to a disability situation is known as dependence. This is related to the need for help from another person in order to carry out activities of daily living. This population group lives with major social limitations that significantly reduce their participation and autonomy. They have high levels of stigma and invisibility from private environments (family and close networks), as well as from the public order (environment, community). The importance of this study lies in the fact that the lack of support and adjustments leads to what authors call the circle of exclusion. This circle describes how not accessing services - due to the difficulties caused by the disability situation impacts biological, social and psychological levels. This situation produces higher levels of exclusion and vulnerability. This study will focus on the process of autonomy and dependence of adults with disability from the model of disability proposed by the International Classification of Functioning, Health and Disability (ICF). The objectives are: i) to write down the relationship between autonomy and dependence based on socio-health variables and ii) to determine the relationship between the situation of autonomy and dependence and the expectations and interests of the participants. We propose a study that will use a survey technique through a previously validated virtual questionnaire. The data obtained will be analyzed using quantitative and qualitative methods for the details of the profiles obtained. No less than 200 questionnaires will be administered to people between 18 and 64 years of age who self-identify as having some degree of dependency due to disability. For the analysis of the results, the two main variables of autonomy and dependence will be considered. Socio-demographic variables such as age, gender identity, area of residence and family composition will be used. In relation to the biological dimension of the situation, the diagnosis, if any, and the type of disability will be asked. For the description of these profiles of autonomy and dependence, the following variables will be used: self-perception, decision-making, interests, expectations and life project, care of their health condition, support and social network, and labor and educational inclusion. The relationship between the target population and the variables collected provides several guidelines that could form the basis for the analysis of other research of interest in terms of self-perception, autonomy and dependence. The areas and situations where people state that they have greater possibilities to decide and have a say will be obtained. It will identify social (networks and support, educational background), demographic (age, gender identity and residence) and health-related variables (diagnosis and type of disability, quality of care) that may have a greater relationship with situations of dependency or autonomy. It will be studied whether the level of autonomy and/or dependence has an impact on the type of expectations and interests of the people surveyed.

Keywords: life project, disability, inclusion, autonomy

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Authors: Leoni Van Der Merwe

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Historically, in South Africa, disability has been viewed as a dilemma of the individual. The discourse surrounding the definition of disability and applicable theories are as fluid as the differing needs of persons with disabilities within society. In 1997, the Office of the Deputy President published the White Paper on the Integrated National Disability Strategy (WPINDS) which sought to integrate disability issues in all governmental development strategies, planning and programs as well as to solidify the South African government’s stance that disability was to be considered according to the social model and not the, previously utilized, medical model of disability. The models of disability are conceptual frameworks for understanding disability and can provide some insight into why certain attitudes exist and how they are reinforced in society. Although the WPINDS was regarded as a critical milestone in the history of the disability rights struggle in South Africa; it has taken approximately twenty years for the publication of a similar document taking into account South Africa’s changing social, economic, political and technological dispensation. December 2015 marked the approval of the White Paper on the Rights of Persons with Disabilities (WPRPD) which seeks to update the WPINDS, integrate principles contained in international law instruments and endorse a mainstreaming trajectory for realizing the rights of persons with disabilities. While the WPINDS and the WPRPD were published two decades apart, both documents contain an emphasis on a transition from the medical model to the social model. Whereas, the medical model presupposes that disability is mainly a health and welfare matter and is focused on an individualistic and dependency-based approach; the social model requires a paradigm shift in the manner in which disability is constructed so as to highlight the shortcomings of society in respect of disability and to bring to the fore the capabilities of persons with disabilities. The social model has led to unmatched success in changing the perceptions surrounding disability. This article seeks to investigate the progress made in the implementation of the social model in South Africa by taking into account the effect of the diverse political and cultural landscape in promoting the historically entrenched medical model and the rise of disability activism prior to the new democratic dispensation as well as legislation, case law, policy documents and barriers in respect of persons with disabilities that are pervasive in South African society. The research paper will conclude that although numerous interventions have been identified and implemented to promote the consideration of disability within a social construct in South Africa, such interventions require increased national and international collaboration, resources and pace to ensure that the efforts made lead to sustainable results. For persons with disabilities, what remains to be seen is whether the proliferation of activism by interest groups, social awareness as well as the development of policy documents, legislation and case law will serve as the impetus to dissipate the view that disability is burden to be carried solely on the shoulders of the person with the disability.

Keywords: disability, medical model, social model, societal barriers, South Africa

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Authors: Fadzayi M.Maruza

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The conversation about diversity in the African academy focuses on the need for an international and ethnically diverse population of scholars and students. Operationalising the concept of cognitive diversity offers us an opportunity to broaden our conception of who can know and who can proclaim knowledge by availing new understandings of what knowledge is and how it is made. Limited attention is paid to the value of diversity generated by cognitive disabilities in the African academy. The inclusion of persons with minds labelled disabled in African academia requires an epistemology of disability to reform the still dominant notion of the expert and scholar as an able-bodied and hyper-rational in African academia. This review wants to explore how cognitive disabilities have been represented in higher education research in Africa or has the African academy reinforced ignorance by promoting an able-bodied academia. The review aims to tackle its exploratory objective by using Malcom Tights framework. The main questions this paper would focus on are: (I)What are the major disability themes and concerns discussed in the disability-related articles? (II)What are the major methods or methodologies used to address the topic in the papers? (III)What are the levels of analysis the papers focus on? (IV)How do higher education researchers define and represent cognitive disabilities in higher education research in Africa? To answer the exploratory questions that are aimed at mapping the disability-related higher education research landscape, Malcolm Tights’ framework is seen as most appropriate. In addition to a thematic categorization, that shall be made after reviewing of published empirical studies on disability in African higher education from the period 2010 – 2017. A synthesis of the findings and implications of African disability studies relating to students with cognitive disabilities in the African Academy will be provided using the categories suggested by Tight as a benchmark. Data for the proposed work shall be taken from well-reputed higher education journals between 2010 and 2017.Using the keyword ‘Disability’ in the titles, abstracts and keywords section of journal articles, a selection of disability-focused higher education articles shall be compiled for analysis regarding cognitive disability. It has to be noted as a limitation that the word Disability might not be sufficient to investigate the topic for there can be many more specific disabilities concerns the researchers would discuss. Therefore, the paper is only intended to give a bird’s eye view of cognitive disability in higher education research and therefore is not comprehensive. The paper is expected to shed some light for me, as a beginning researcher, and other researchers like myself as to what has been the focus of higher education researchers about cognitive disability in the African academy. Keywords: Cognitive diversity, cognitive disability, disability, higher education.

Keywords: cognitive disability, cognitive diversity, disability, higher education

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Authors: Abdullah Abdulsalam, Adamu Balami, Olajide Olubanji Olowe, Maryam Abdu Abdulkadir

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The development and persistence of low back pain may be influenced by several factors which include lifestyle factors, previous pain symptoms, psychological factors, workplace factors as well as socio-demographic variables. The focus of this study was to determine the socio-demographic and work related variables as a predictor of persistence of back pain and disability among civil servants receiving physiotherapy in tertiary health institutions in Kano, Nigeria. One hundred and twenty nine newly referred low back pain patients for physiotherapy participated in the study. This study was a cross sectional study involving patients that were newly diagnosed of back pain, referred and received physiotherapy. The convenience sampling technique was used to select the patients based on the inclusion criteria. The data obtained was analysed using simple percentage and multiple regression for stated hypothesis at 0.05 level of significance. The findings reveal that all the variables are not significant predictor of persistence of back pain and disability. The study recommended that determinants of low back pain recovery by clinician should include other clinical factors not only reduction in pain intensity.

Keywords: socio-demographic, work related variables, Kano state, back pain and disability

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Authors: Amratpal Kaur

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The right to education is universal in nature. This right has been enshrined in Indian Constitution and in various significant international documents. Unfortunately, despite of comprehensive legislation at the regional and international level 98% children with disabilities in developing countries don’t attend schools. Vast majority of children suffering from disability in developing nations lack basic literacy. The paper discusses in detail that the term inclusive education has got impetus all over the world and more so in India in the last decade. India has committed itself to the development of an inclusive education system as it is signatory to the Salamanca Statement and it has strived to achieve it thereon. Due to the shift from medical to social model of disability the emphasis is on inclusive school, so that the disabled children can be integrated in the mainstream easily. Thus, the idea is to educate disabled children along with their peers. The paper focuses on developing a clear understanding of inclusive education and identifying strategies to enhance the education of all children at the regional and international level.

Keywords: inclusion, disability, education, policy

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Authors: Su-Lin Yu

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In recent years, we have witnessed the growing scholarship on transnational theorizing and activism within disability. In particular, the universalizing discourses of disability formulated in the Global North seem inadequate in engaging the vast diversity of discourses of disability that emerge in global and local policies as well as the everyday experiences of disabled people in the Global South. This study will further consider the future possibilities of how Taiwanese and global disability studies might interchange disability knowledge. First, this study will determine how a local literature of disability can be formed in Taiwan by examining life writings written by Taiwanese disabled women. Both the texts and the personal experiences are treated as social products which can, through their discourses, offer insight into the socio-cultural practices and norms of disability and womanhood in Taiwan. This paper argues that more than by the impairment in itself, the experiences of disabled women are shaped by the social and cultural discourses and practices that define disability and womanhood as well as the normative roles, places, and contexts associated with them. Simultaneous analysis of disability and womanhood exemplifies the way in which disability operates in a complex interaction with the socio-cultural discourses and practices of womanhood, thus producing gender-differentiated disabling obstacles for disabled women. Another purpose of this study is to gain an understanding of the transformative experience of women with disabilities and their perceptions of the self. Designed to provide positive, realistic pictures of the lives of women with disabilities and the social, economic, and political issues they face, their life writings demonstrate how they as disabled women simultaneously struggle with writing a new identity and creating an ethical narrative. These strong and articulate women construct narratives that attempt to recount the remarkable journey that transformed them from dependent women to community activists and writers who speak forcefully about the needs of people with disabilities. More than a story of one woman's struggle for independence, their writing, then, is a testimony to the importance of community building and organizing to enable local people with disabilities to live fulfilling lives.

Keywords: gender, disability, representation, agency

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Authors: Hanh Thi My Nguyen, Phuong Thu Dinh

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People with intellectual disability are at high risk for sexual abuse. The reasons may originate from their communication skills deficits, lack of skills and knowledge to protect themselves from sexual abuse, or limited access to sexual abuse prevention programs. This article aims to present a systematic review about strategies for preventing sexual abuse for young people with intellectual disability. A range of articles in 10 years from 2009 to 2018 are searched by using online database. 5 papers are included for the final review. The results of this comprehensive literature review showed that there are two main strategies used: programs designed for people with intellectual, including evaluation on sex education programs; and sexual education program for parents of children with intellectual disability. However, none of the papers were conducted in low-and middle-income countries. Therefore, cautions should be taken when it comes to interpret these findings. The findings of studies showed that participants increased their awareness and skills for protecting themselves from sexual abuse after participating in the programs. It is also recommended that more effective evidence-based programs should be developed.

Keywords: intellectual disability, prevention, sexual abuse, sexual education program

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Authors: Anwaar Anwar Tayel

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Background: Rheumatic arthritis (RA) affect all aspects of patients' life, lead to various degrees of disability, and ultimately has a profound impact on the social, economic, psychological, and sexual aspects of the patient's life. Aim of the study: Identify physical, psychological, and sexual implications of rheumatoid arthritis among women in reproductive age. In addition to investigating the correlations between physical functional disability, psychological problems, and sexual dysfunction.Settings: The study was conducted at Rheumatology Clinic at the Main University Hospital of Alexandria. Subjects: Purposive sample was chosen from women patients with rheumatoid arthritis to be subjects of this study (n=250). Tools: Four tools were used to collect data. Tool I: Socio-demographic questionnaire. Tool II: Stanford Health Assessment Questionnaire Disability Index (HAQ- DI). Tool III: Depression Anxiety Stress Scale (DASS). Tool IV: The Sexual Dysfunction Questionnaire (SDQ) Results: The majority of the studied women suffer from severe physical disability, extreme level of depression, anxiety, and about half of them had an extreme level of stress. Also, the majority of the studied women had a severe level of sexual dysfunction. Also, statistically significant correlations between women's physical disability index, psychological problems, and sexual dysfunction were detected. Conclusion: The findings from this study confirm that women patients with RA suffer from multiple negative implications on the physical, psychological and sexual functions. Recommendations: Provide ongoing support to the patients from the time of diagnosis throughout their care and management. To help them to manage their pain and disabilities, improve their sexual function, promote their mental health, and optimize psychosocial functioning

Keywords: pysical, spycholgical, sexual, implication, rheumatic arthritis

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Authors: Chia-Feng Yen, Shyang-Woei Lin

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Background: In Taiwan, people with disability can obtain national social welfare services after evaluation. All subsidies and services in- kind are pronounced in People with Disabilities Rights Protection Act. The new disability eligibility determination system base on ICF has carried out five years in Taiwan. There were no systematic outcomes to discuss the relationships between the evaluation results of activity and participation functioning (AP functioning) and ratification of social services for people with disability. The decision-making of welfare resources allocation is in local government, so the ratification could be affected by resource variations in every area (local governments). The purposes of this study are to compare the ratification rate between different areas (the equity of allocation), and to understand the ratification of social services for people with disability after needs assessment stage that can help to predict the resources allocation for local governments in the further. Methods: A cross-sectional study was used, and the data came from Disability Eligibility Determination System in Taiwan between 2013/11/04-2015/01/12. All samples were evaluated by FUNDES-adult version 7th and they all above 18 years old. The samples were collected face to face by physicians and AP evaluators. Result: In the needs assessment stage, the welfare ratification rates are significant differences between these local governments for the samples with the similar impairment and AP functioning.

Keywords: allocation, activity and participation, people with disability, justice

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Authors: Elizabeth Godwin Mahenge

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This study seeks to investigate the portrayal of albinism in Swahili literature. People with albinism have faced many life-threatening challenges, from being hunted for their body parts of being assigned derogatory names that depict them as ghosts as or less than humans. Many studies have been conducted on the perception of people towards Persons with Albinism [PWA] worldwide. Findings showed there is negative perception or negative portrayal of PWA in different societies worldwide. These negative connotations raised hot debates around the world among different societies and associations of/for PWA. People with disability in different parts of the world started arguing the labeling and name calling same applied to persons with disability in Tanzania (albinism included). They went the same debate about name calling hence in 2010, the Tanzanian Parliament passed the bill on Persons with Disability Act which banned derogative names attached to disability in general and to albinism in particular. In Tanzanian societies, there have been a mixed feelings with regards to albinism. Some do have negative perceptions because of the killings with connection to superstitious believes, while in other societies are perceived positively as blessed children a family. From these two contradictory perceptions that exist in this society, the study seeks to find out how Swahili literature portrays albinism.

Keywords: albinism, portrayal, disability, Kiswahili literature

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Authors: Lin Fu-Gong

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Background: As WHO announced, people with intellectual disability (ID) were vulnerable to mental health problems. And there were few custom-made mental health scales for those people to monitor their mental health. Those people with mental problems often accompanied worse prognosis and usually became to be a heavier burden on the caregivers. Purpose: In this study, we intend to develop a psychopathy scale as a practical tool for monitoring the mental health for people with ID living in institute. Methods: In this study, we adopt the Psychopathology Inventory for Mentally Retarded Adults developed by professor Matson with certified reliability and validity in Western countries with Dr. Matson’s agreement in advance. We first translated the inventory into Chinese validated version considering the domestic culture background in the past year. And the validity and reliability evaluation of mental health status using this inventory among the people with intellectual living in the institute were done. Results: The inventory includes eight psychiatric disorder scales as schizophrenic, affective, psychosexual, adjustment, anxiety, somatoform, personality disorders and inappropriate mental adjustment. Around 83% of 40 invested people, who randomly selected from the institute, were found to have at least one disorder who were recommended with medical help by two evaluators. Among the residents examined, somatoform disorder and inappropriate mental adjustment were most popular with 60% and 78% people respectively. Conclusion: The result showed the prevalence psychiatric disorders were relatively high among people with ID in institute and the mental problems need to be further cared and followed for their mental health. The results showed that the psychopathology inventory was a useful tool for institute caregiver, manager and for long-term care policy to the government. In the coming stage, we plan to extend the use of the valid Chinese version inventory among more different type institutes for people with ID to establish their dynamic mental health status including medical need, relapse and rehabilitation to promote their mental health.

Keywords: intellectual disability, psychiatric disorder, psychopathology inventory, mental health, the institute

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Authors: Jennifer Isabelle Rios Rendón, Ursula Sanchez, Dana Lee Baker

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Disability Policy in México has witnessed numerous changed throughout the years. Physical disabilities are more often recognized in Mexican culture. However, with an emerging focus on neurological disabilities or differences in individuals’ new policies are needed to serve better and understand the needs of these populations. The need to understand and communicate with local leaders is imperative, as the lens used to analyze autism has historically been from a Western school of thought. We are looking to comprehend the disability policy subsystem in México - specifically how autism is perceived, the language used to describe it, and how it ties to the cultural stigma of disabilities that exist in México. Therefore, to understand this, we seek to interview multiple policy leaders on their experience in autism and disability policy. The goal is to conduct qualitative research through interviews with local autism and disability leaders in México. This methodology aims to answer the questions of what language commonly and culturally is utilized in disability policy, the context of how autism is perceived in México, and in general, the lived experience of the disability policy leaders that take part in this effort in México. Local activists and policy leaders were initially found through an online search then collected using snowball sampling. The interviews were conducted through a series of pre-formulated questions that the policy leader answered via email or a phone conversation with the researchers. Acknowledging the importance of language and accessibility, the need for the content to be in both English and Spanish as well as auditory and visual is essential to take steps in the inclusion of a Neurodiverse group of leaders. This work is a demonstration of the framework of the investigation which hopes to create a more complete understanding of the policy and political culture around autism in México. Results of the project include new insight into the developing relationship between the President Andrés Manuel López Obrador’s administration, disability activists, and neurodiverse communities. The project contributes to denormalizing the legacy of white supremacy in autism related, historically rooted in the assumption that autism occurs predominantly in white communities.

Keywords: autism, disability leaders, disability policy, México, Neurodiversity

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Authors: Jihye Jeon

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This paper analyzes the political and economic issues that people with disabilities face related to globalization; how people with disabilities have been adapting globalization and surviving under worldwide competition system. It explains that economic globalization exacerbates inequality and deprivation of people with disabilities. The rising tide of neo-liberal welfare policies emphasized efficiency, downsized social expenditure for people with disabilities, excluded people with disabilities against labor market, and shifted them from welfare system to nothing. However, there have been people with disabilities' political responses to globalization, which are characterized by a global network of people with disabilities as well as participation to global governance. Their resistance can be seen as an attempt to tackle the problems that economic globalization has produced. It is necessary paradigm shift of disability policy from dependency represented by disability benefits to independency represented by labor market policies for people with disabilities.

Keywords: economic globalization, people with disability, deprivation, welfare cut, disability right movement, resistance

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Authors: Jill Hanass-Hancock, Bradley Carpenter, Samantha Willan, Kristin Dunkle

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Access to quality health care for persons with disabilities is the litmus test in our strive toward universal health coverage. Persons with disabilities experience a variety of health disparities related to increased health risks, greater socioeconomic challenges, and persistent ableism in the provision of health care. In low- and middle-income countries, the support needed to address the diverse needs of persons with disabilities and close the gaps in inclusive and accessible health care can appear overwhelming to staff with little knowledge and tools available. An action-orientated disability inclusion toolkit for health facilities was developed through consensus-building consultations and field testing in South Africa. The co-creation of the toolkit followed a bottom-up approach with healthcare staff and persons with disabilities in two developmental cycles. In cycle one, a disability facility assessment tool was developed to increase awareness of disability accessibility and service delivery gaps in primary healthcare services in a simple and action-orientated way. In cycle two, an intervention menu was created, enabling staff to respond to identified gaps and improve accessibility and inclusion. Each cycle followed five distinct steps of development: a review of needs and existing tools, design of the draft tool, consensus discussion to adapt the tool, pilot-testing and adaptation of the tool, and identification of the next steps. The continued consultations, adaptations, and field-testing allowed the team to discuss and test several adaptations while co-creating a meaningful and feasible toolkit with healthcare staff and persons with disabilities. This approach led to a simplified tool design with ‘key elements’ needed to achieve universal health coverage: universal design of health facilities, reasonable accommodation, health care worker training, and care pathway linkages. The toolkit was adapted for paper or digital data entry, produces automated, instant facility reports, and has easy-to-use training guides and online modules. The cyclic approach enabled the team to respond to emerging needs. The pilot testing of the facility assessment tool revealed that healthcare workers took significant actions to change their facilities after an assessment. However, staff needed information on how to improve disability accessibility and inclusion, where to acquire accredited training, and how to improve disability data collection, referrals, and follow-up. Hence, intervention options were needed for each ‘key element’. In consultation with representatives from the health and disability sectors, tangible and feasible solutions/interventions were identified. This process included the development of immediate/low-cost and long-term solutions. The approach gained buy-in from both sectors, who called for including the toolkit in the standard quality assessments for South Africa’s health care services. Furthermore, the process identified tangible solutions for each ‘key element’ and highlighted where research and development are urgently needed. The cyclic and consultative approach enabled the development of a feasible facility assessment tool and a complementary intervention menu, moving facilities toward universal health coverage for and persons with disabilities in low- or better-resourced contexts while identifying gaps in the availability of interventions.

Keywords: public health, disability, accessibility, inclusive health care, universal health coverage

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Authors: Khodi Morgan, Kasey Crowe, Amanda Morgan

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Canadian High School Students' Attitudes & Objective: To survey Canadian high school students regarding their attitudes and perspectives towards people with disabilities and explore how age, gender, and personal experience with a disability may impact these views. Methods: A survey was developed using the standardized Attitude Toward Persons With Disability Scale as its base, with the addition of questions specifically about Autism and Attention Deficit Hyperactivity Disorder (ADHD). The survey also gathered information about the participant’s age and gender and whether or not they, or a close family member, had any disabilities. Participants were recruited at a public Canadian high school by fellow student researchers. Results: A total of 219 (N=219) students ranging from 13 - 19 years old participated in the study (m= 15.9 years of age). Gender was equally split, with 44% male, 42% female and 14% undeclared. Experience with a disability was common amongst participants, with 25% self-identifying as having a personal disability and 48% claiming to have a close family member with a disability. Exploratory trends indicated that females, people with self-identified disabilities, and people with close family members with disabilities trended towards having more positive attitudes toward persons with disabilities.

Keywords: disability, autism, ADHD, high school, adolescence, community research, acceptance

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Authors: Jui-Chen Huang

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The purpose of this study is to explore the effects of telecare on preventing and delaying the quality of disability care in elderly people with portable comfort Bluetooth brainwave devices with remote healthcare functions. Through the teaching videos and remotely teaching the elderly, which had ever learned the care courses of the prevent and delay disability, these elderly did muscle strength training. Then this paper explores the effect of training with the data by SPSS 18.0 statistical software. The data is collected with pre-test, post-test and analyze data from the measure of the Bluetooth brain wave equipment including the pressure index, relaxation index, attention and fatigue index of the elderly. In this study, 30 elderly people who had taken preventive and delayed disability care courses were studied to explore the effect of their care quality improvement. The results showed that the pressure index, relaxation index, attention, and fatigue index of the elderly had statistically significant differences in two months. It can be seen that elderly people who have been treated to prevent and delay disability care courses can significantly improve their care quality if they continue to receive intensive training to prevent and delay disability through remote mode. This telecare is applied to the elderly program that has been used to prevent and delay disability care courses. It is worth continuing to promote, and it is recommended that follow-up studies be conducted in a longer-term manner to explore long-term benefits. It can solve the current insufficiency of long-term care resources, but the demand is urgent.

Keywords: telecare, bluetooth brainwave equipment, prevention and delay of disability, the elderly, care quality

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Authors: Charles Masulani Mwale

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Background: It is argued that 85% of children with the disability live in resource-poor countries where there are few available disability services. A majority of these children, including their parents, suffer a lot as a result of the disability and its associated stigmatization, leading to a marginalized life. These parents also experience more stress and mental health problems such as depression, compared with families of normal developing children. There is little research from Africa addressing these issues especially among parents of intellectually disabled children. WHO encourages research on the impact that child with a disability have on their family and appropriate training and support to the families so that they can promote the child’s development and well-being. This study investigated the parenting experiences, mechanisms of coping with these challenges and psychosocial needs while caring for children with intellectual disabilities in both rural and urban settings of Lilongwe and Mzuzu. Methods: This is part of a larger Mixed-methods study aimed at developing a contextualized psychosocial intervention for parents of intellectually disabled children. 16 focus group discussions and four in-depth interviews were conducted with parents in catchments areas for St John of God and Children of Blessings in Mzuzu and Lilongwe cities respectively. Ethical clearance was obtained from COMREC. Data were stored in NVivo software for easy retrieval and management. All interviews were tape-recorded, transcribed and translated into English. Note-taking was performed during all the observations. Data triangulation from the interviews, note taking and the observations were done for validation and reliability. Results: Caring for intellectually disabled children comes with a number of challenges. Parents experience stigma and discrimination; fear for the child’s future; have self-blame and guilt; get coerced by neighbors to kill the disabled child; and fear violence by and to the child. Their needs include respite relief, improved access to disability services, education on disability management and financial support. For their emotional stability, parents cope by sharing with others and turning to God while other use poor coping mechanisms like alcohol use. Discussion and Recommendation: Apart from neighbors’ coercion to eliminate the child life, the findings of this study are similar to those done in other countries like Kenya and Pakistan. It is recommended that parents get educated on disability, its causes, and management to array fears of unknown. Community education is also crucial to promote community inclusiveness and correct prevailing myths associated with disability. Disability institutions ought to intensify individual as well as group counseling services to these parents. Further studies need to be done to design culturally appropriate and specific psychosocial interventions for the parents to promote their psychological resilience.

Keywords: psychological distress, intellectual disability, psychosocial interventions, mental health, psychological resilience, children

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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: Prajakta Bhadgaonkar

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Forgiveness is taught since birth in Indian tradition. However, delivering a disabled child is a trauma for the parents. They keep on blaming themselves for the fault, which they are not responsible. Hence, due to lack of forgiving oneself the quality of life of both parent and child gets affected. In forgiveness, person tries to relieve oneself from the feeling of hatred towards oneself or other person. Forgiveness helps move ahead in the life. Hence, one can handle problem more efficiently resulting into better quality of life. In this study, the 30 parents of children with intellectual disability were contacted to find out quality of life. They were administered standardized measure of quality of life (QOL). The children were between 6 to 8 years of age. Out of these 30 parents, 12 parents (7 females and 5 males) were given forgiveness therapy for three months span. After every one month, the QOL scale was administered. At the end of three months, the significant difference was observed in quality of life of parents of children with intellectual disability. Genderwise there was no significant difference between male and female on quality of life.

Keywords: children with intellectual disability, forgiveness, parents, quality of life

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Authors: Payal Maheshwari, Maheaswari Brindavan

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The present study aimed at studying the level of perceived self-efficacy of children with learning disability and their mother’s perception about the efficacy of the child and the relationship between the two. The study further aimed at finding out the relationship between the level of perceived self-efficacy of children with learning disability and their academic achievement and their mother’s perception about the Efficacy of the child and child’s Academic Achievement. The sample comprised of 80 respondents (40 children with learning disability and their mothers). Children with learning disability as their primary condition, belonging to middle or upper middle class, living with both the parents, residing in Mumbai and their mothers were selected. Purposive or judgmental and snowball sampling technique was used to select the sample for the present study. Proformas in the form of questionnaires were used to obtain the background information of the children with learning disability and their mother’s. A self-constructed Mother’s Perceived Efficacy of their Child Assessment Scale was used to measure mothers perceived level of efficacy of their child with learning disability. Self-constructed Child’s Perceived Self-Efficacy Assessment Scale was used to measure the level of child’s perceived self-efficacy. Academic scores of the child were collected from the child’s parents or teachers and were converted into percentage. The data were analyzed quantitatively using frequencies, mean and standard deviation. Correlations were computed to ascertain the relationships between the different variables. The findings revealed that majority of the mother’s perceived efficacy about their child with learning disability was above average as well as majority of the children with learning disability also perceived themselves as having above average level of self-efficacy. Further in the domains of self-regulated learning and emotional self-efficacy majority of the mothers perceived their child as having average or below average efficacy, 50% of the children also perceived their self-efficacy in the two domains at average or below average level. A significant (r=.322, p < .05) weak correlation (Spearman’s rho) was found between mother’s perceived efficacy about their child, and child’s perceived self-efficacy and a significant (r=.377, p < .01) weak correlation (Pearson Correlation) was also found between mother’s perceived efficacy about their child and child’s academic achievement. Significant weak positive correlation was found between child’s perceived self-efficacy and academic achievement (r=.332, p < .05). Based on the findings, the study discussed the need for intervention program for children in non-academic skills like self-regulation and emotional competence.

Keywords: learning disability, perceived self efficacy, academic achievement, mothers, children

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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: Liam Martin, Martha Watson

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Patients with learning disabilities (LD) are at increased risk of physical and mental illness due to health inequality. To address this, NICE recommends that people from the age of 14 with a learning disability should have an annual LD health check. This consultation should include a holistic review of the patient’s physical, mental and social health needs with a view of creating an action plan to support the patient’s care. The expected standard set by the Quality and Outcomes Framework (QOF) is that each general practice should review at least 75% of their LD patients annually. During COVID-19, there have been barriers to primary care, including health anxiety, the shift to online general practice and the increase in GP workloads. A surgery in North London wanted to assess whether they were falling short of the expected standard for LD patient annual reviews in order to optimize care post Covid-19. A baseline audit was completed to assess how many LD patients were receiving their annual reviews over the period of 29th September 2020 to 29th September 2021. This information was accessed using EMIS Web Health Care System (EMIS). Patients included were aged 14 and over as per QOF standards. Doctors were not notified of this audit taking place. Following the results of this audit, the creation of learning disability clinics was recommended. These clinics were recommended to be on the ground floor and should be a dedicated time for LD reviews. A re-audit was performed via the same process 6 months later in March 2022. At the time of the baseline audit, there were 71 patients aged 14 and over that were on the LD register. 54% of these LD patients were found to have documentation of an annual LD review within the last 12 months. None of the LD patients between the ages of 14-18 years old had received their annual review. The results were discussed with the practice, and dedicated clinics were set up to review their LD patients. A second pass of the audit was completed 6 months later. This showed an improvement, with 84% of the LD patients registered at the surgery now having a documented annual review within the last 12 months. 78% of the patients between the ages of 14-18 years old had now been reviewed. The baseline audit revealed that the practice was not meeting the expected standard for LD patient’s annual health checks as outlined by QOF, with the most neglected patients being between the ages of 14-18. Identification and awareness of this vulnerable cohort is important to ensure measures can be put into place to support their physical, mental and social wellbeing. Other practices could consider an audit of their annual LD health checks to make sure they are practicing within QOF standards, and if there is a shortfall, they could consider implementing similar actions as used here; dedicated clinics for LD patient reviews.

Keywords: COVID-19, learning disability, learning disability health review, quality and outcomes framework

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Authors: Jenny Fairthorne, Yuka Mori, Helen Leonard

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Background: Primary care-givers of children with autism spectrum disorder (ASD) or intellectual disability (ID) have poorer health and quality of life (QoL) than primary care-givers (hereafter referred to as just care-givers) of typically developing children. We aimed to review original research which described factors impacting the health of care-givers of children with ASD or ID and to discuss how these factors might influence care-giver health. Methods: We searched Web of Knowledge, Medline, Scopus and Google Scholar using selections of words from each of three groups. The first comprised terms associated with ASD and ID and included autism, pervasive development disorder, intellectual disability, mental retardation, disability, disabled, Down and Asperger. The second included terms related to health such as depression, physical, mental, psychiatric, psychological and well-being. The third was terms related to care-givers such as mother, parent and care-giver. We included an original paper in our review if it was published between 1st January 1990 and 31st December, 2016, described original research in a peer-reviewed journal and was written in English. Additional criteria were that the research used a study population of 15 persons or more; described a risk or protective factor for the health of care-givers of a child with ASD, ID or a sub-type (such as ASD with ID or Down syndrome). Using previous research, we developed a simple and objective five-level tool to assess the strength of evidence provided by the reviewed papers. Results: We retained 33 papers. Factors impacting primary care-giver health included child behaviour, level of support, socio-economic status (SES) and diagnostic issues. Challenging child behaviour, the most commonly identified risk factor for poorer care-giver health and QoL was reported in ten of the studies. A higher level of support was associated with improved care-giver health and QoL. For example, substantial evidence indicated that family support reduced care-giver burden in families with a child with ASD and that family and neighbourhood support was associated with improved care-giver mental health. Higher socio-economic status (SES) was a protective factor for care-giver health and particularly maternal health. Diagnostic uncertainty and an unclear prognosis are factors which can cause the greatest concern to care-givers of children with ASD and those for whom a cause of their child’s ID has not been identified. We explain how each of these factors might impact caregiver health and how they might act differentially in care-givers of children with different types of ASD or ID (such as Down syndrome and ASD without ID). Conclusion: Care-givers of children with ASD may be more likely to experience many risk factors and less likely to experience the protective factors we identified for poorer mental health. Interventions to reduce risk factors and increase protective factors could pave the way for improved care-giver health. For example, workshops to train care-givers to better manage challenging child behaviours and earlier diagnosis of ASD (and particularly ASD without ID) would seem likely to improve care-giver well-being. Similarly, helping to expand support networks might reduce care-giver burden and stress leading to improved health.

Keywords: autism, caregivers, health, intellectual disability, mothers, review

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Authors: Jayanti Pujari

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The present study attempts to find out the barriers faced by adult women with an Intellectual disability during their training at vocational training centres offered by rehabilitation institutes. As economic independence is the ultimate aim of rehabilitation, this study tries to focus on the barriers which restrict the adult women with intellectual disability in equipping themselves in required skill which can really empower them and help them in independent living. The objectives of the study are (1) To find out the barriers perceived by job coaches during training given to women with intellectual disability (2) To find out the barriers perceived by the parents of women with intellectual disability who are undergoing vocational training and (3) To find out the barriers perceived by the women with intellectual disabilities during the vocational training. The barriers have been operationalised in the present study from three perspectives such as behavioural barriers, competency related barriers and accessibility barriers. For the present study three groups of participants(N=60) have been selected through purposive nonprobability sampling procedure to generate the data. They are( 20) job coaches who are working at vocational centres, (20) parents of women with intellectual disabilities, (20) adult women with intellectual disabilities. The study followed a descriptive research design and data are generated through self developed questionnaire. Three sets of self-developed and face validated questionnaires were used as the tool to gather the data from the three categories of sample. The questionnaire has 30 close ended questions and the respondents have to answer on a three point scale (yes, no, need help). Both qualitative and quantitative analysis was conducted to test the hypothesis. The major findings of the study depict that the 87% of the women with intellectual disability perceived highest barriers related to competency whereas barriers related to behaviour and accessibility are perceived lowest. 92% of job coaches perceived barriers related to competencies and accessibility are highest which hinder the effectiveness of skill development of women with intellectual disability and 74% of the parents of adult women with intellectual disability also opines that the barriers related to competencies and accessibility are highest. In conclusion, it is stressed that there is need to create awareness among the stakeholders about the training and management strategies of skill training and positive behaviour support which will surely enable the adult women with intellectual disability to utilise their residual skill and acquire training to become economically independent.

Keywords: economic independence, intellectual disability, skill development, training barrier

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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: M. Abdul Jalil

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Parents caring for a child with a profound disability encounter different experiences compared to the parents caring for a child without a disability. The aim of this paper is to develop a greater understanding of parenting of a child with profound disabilities in the context of developing countries with reference to Bangladesh. The paper reveals that parents caring for a child with a profound disability are experiencing increased financial burden, affiliate and courtesy stigma and negative impact on mothers in terms of additional caregiving role, instability of conjugal relations, giving up of involvement in economic activities, and shrinking kinship and social relationships. In addition, government and non-government services for children with disabilities are very limited. Moreover, the information about the services is also not available to the parents. Therefore, parents find it difficult to cope with the challenges that lead to the alienation of the parents. The paper recommended the strategies to address the issues in the context of Bangladesh, which in turn might be applicable to the developing countries as well.

Keywords: caregiving, coping, parenting, profound disability

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Authors: Caroline Dickson

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While adolescence can be a challenging time, it may also be a time of opportunity. Whereas adolescents with a physical disability negotiate the adolescent developmental stage with similar issues to able-bodied adolescents, they additionally may encounter developmental problems which may impede their adulthood. In part due to the restricted opportunities disabled adolescents experience, they may experience difficulty with mastering this developmental stage. As is well documented, health and wellbeing are positively associated with participating in physical activity. However, the little research available suggested that Pacific adolescents generally are participating in less physical activity than adolescents of other ethnic groups. Objective/Study: The main aim of the study (from a larger mixed method study), was to explore physical activity participation in Pacific adolescent girls with a physical disability in relation to their physiological and psychological wellbeing. The qualitative descriptive study comprised of seven interviews with Pacific adolescent girls and their mothers in a family setting and also included the providers of services to Pacific girls with a physical disability. Including the providers of disability services allowed the researchers to identity a further understanding into challenges of participation for the Pacific adolescent girls and their families while the girls were attempting to participate in physical activity. The purpose of the talanoa (face-to-face interviews that were deemed informal) was to identify partaking and factors influencing participation in physical activity, whilst listening to the voices of the participants. The stories revealed the multitude of factors that influenced physical activity for the Pacific girls with a physical disability. Results: Findings from the qualitative descriptive study found that through physical activity, the Pacific adolescent girls with a physical disability experienced benefits from participation. The findings suggested that these girls wanted to participate in physical activity and clearly indicated the physical activities they preferred. Amongst the physiological and psychological benefits of the Pacific adolescents engaging in physical activity, the adolescents were able to develop positive social relationships, experience autonomy, and generally, their self-worth improved while building confidence. Nevertheless, the adolescents experienced a multitude of factors impeding their engagement in physical activity including cultural stigmas. Their participation was influenced by the interplay of a range of gender, cultural, age-related (adolescence) and socio-economic factors alongside policy and structurally related constraints. Conclusion: Physical activity has the potential to improve the general physiological and psychological health of all adolescents. It should be prioritised particularly in vulnerable populations where they may have limited access. As the Pacific adolescents with a physical activity are dependent on their families for physical activity participation, it is imperative the family be included and consulted. To increase participation, and reduce sedentary behaviours, factors influencing both participation and non-participation need to be considered.

Keywords: Pacific adolescent girls, physical activity, physical disability, qualitative descriptive study

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Authors: Dorota Kobus-Ostrowska

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Work for everyone, especially for person with disability is a condition in independence; it secures basic needs and develops manual and intellectual capabilities. The work is a source of income, and it builds and strengthens of self-esteem and competence. The purpose of this article is to identify work as an important factor in everyone’s life, despite Polish disabled persons rarely having the chance to undertake a job. In order to achieve this purpose, two methods were used: comparative and qualitative. The theoretical part of this article is based on studies of a wide range of Polish and foreign literature devoted to the issue of the occupational development of people with disabilities. The article was also enriched with the institutional and legal analysis types of support for people with disabilities in Poland. Currently, a Polish person with disability who wants to enter or return to the labor market is under a special protection. Those entities employing workers with disabilities may obtain a subsidy for the salary of a person with disabilities. Unfortunately, people with disability in Poland rarely participate in the workforce. The factors that contribute to this include the difficulty in obtaining work, the uncertainty of keeping it, and the low salary offered. Despite that domestic and foreign literature highlight the important role of disabled people as a workforce, very few people with disability in Poland are economically active.

Keywords: disabled person, employer, rehabilitation, work

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Authors: Ahmed Assem Abd El Rahim

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Background: Mechanical low back pain is serious physical and social health problem. Purpose: To examine impact of shock wave therapy versus intermittent mechanical traction on mechanical LBP, and disabilities. Subjects: 60 mechanical LBP male studied cases years old 20-35 years were assigned randomly into 3 groups, Picked up from Sohag university orthopedic hospital outpatient clinic. Methods: (Study Group) A: 20 studied cases underwent shock wave therapy plus conventional physical therapy. (Study Group) B: twenty studied cases underwent intermittent mechanical traction plus conventional physical therapy. (Control Group) C: 20 patients underwent conventional physical therapy alone. Three sessions were applied weekly for four weeks. Pain was quantified using McGill Pain Questionnaire, Roland Morris Disability Questionnaire was used for measuring disability, and the ROM was evaluated by (BROM) device pre- & post-therapy. Results: Groups (A, B & C) found a reduction in pain & disability & rise in their in flexion and extension ROM after end of 4 weeks of program. Mean values of pain scale after therapy were 15.3, 9.47, and 23.07 in groups A, B, & C. mean values of Disability scale after therapy were 8.44, 4.87, 11.8in groups A, B & C. mean values of ROM of flexion were 25.53, 29.06, & 23.9 in groups A, B & C. mean values of ROM of extension were 11.73, 15.53 & 9.85 in groups A, B & C. studied cases who received intermittent mechanical traction & conventional physical therapy (group B), found reduction in pain & disability & improvement in ROM of flexion & extension value (P<0.001) after therapy program. Conclusion: Shock wave therapy and intermittent mechanical traction, as well as conventional physical treatment, can be beneficial in studied cases with mechanical LBP.

Keywords: mechanical low back pain, shock wave, mechanical, low back pain

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Authors: Fatemeh Jafari Hemmat Abadi

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Through empathy, caring, and nurturing, benevolent leaders can help people with disabilities overcome the stigma of disability and smile at their work environment and work. The main purpose of our research is to examine the performance of people with physical disabilities in virtual teams across geographical, cultural and linguistic barriers around the world. Our results show the relationship between benevolent leadership and the three components of well-being among administrative staff, disability including perceived discrimination, job satisfaction and the need for improvement. The two factors identified for productivity are pervasive team attitudes in the team and proper leadership by the team leader.

Keywords: benevolent leadership, virtual teams, group attitudes pervasive, climate including disability

Procedia PDF Downloads 128