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Living with Ménière’s disease: an interpretative phenomenological analysis
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Purpose: To explore the meanings of Ménière’s disease from the perspective of people living with this condition and to understand what was considered significant and important in participants’ everyday lives.
Materials and methods: Four women with Ménière’s disease participated in face-to-face semi-structured interviews. Accounts were recorded, transcribed, and analysed using an iterative process integral to Interpretative Phenomenological Analysis.
Results: Three interconnected themes were identified. “You have no control whatsoever” conveys participants’ perceptions of vertigo as having a disruptive and ongoing impact on physical and psychosocial function in everyday life. “Ménière’s takes away your life completely” describes Ménière’s as impinging on participants’ most meaningful activities and relationships, and as restricting their ability to live their lives on their own terms. “You get on with life” recounts participants’ efforts to refashion their lives whilst living with this condition and manage its most harmful effects. The psychosocial impact of living with Ménière’s disease and its relevance to rehabilitation is discussed.
Conclusions: Ménière’s disease has an enduring physical and psychosocial impact. Clinicians who acknowledge and respond to an individual’s subjective experience of their condition may be key to their engagement in therapy. Service users should have a voice in health service design and delivery.
Investigating barriers teachers face in the implementation of inclusive education in high schools in Gege branch, Swaziland
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Background: The kingdom of Swaziland is a signatory to policies on universal education that ensure high quality basic education for all. Education for All is a commitment to provide equal opportunities for all children and the youth as provided for in the country’s constitution of 2005. The tone for the introduction of inclusive education in Swaziland was inevitably set by the new constitution of 2005. Since then several policies have been produced by the government, all aimed at providing equal education opportunities to all children in the country. These policies include the Swaziland National Children’s Policy (2009), Poverty Reduction Strategy and Action Plan (2006) and Draft Inclusive Education Policy (2008). The Education for All Policy (2010) is the policy that upon implementation became a stimulus for the introduction of inclusive education into mainstream schools; as a result, all teachers in the country’s schools were expected to be competent enough to teach learners with a wide range of educational needs. However, in-service teachers received inadequate staff development and training ahead of the implementation of inclusive education and a majority of teachers were not professionally developed for inclusive education, as pre-service students at tertiary training level.
Objectives: This study investigated barriers in the implementation of inclusive education at high schools in the Gege branch, Swaziland, with a view to finding lasting solutions to inform research and government policy.
Method: This research is a qualitative interpretive case study based on selected schools in the Gege branch of schools. Data was obtained through semi-structured research interviews and document analysis. It was processed and analysed through data coding, unitising, categorising and emergence of themes, which became the findings of the study.
Results: Lack of facilities in the governments’ schools and teachers’ incompetence in identifying learners facing learning challenges in their classrooms are some barriers to inclusivity.
Conclusion: The study concludes that there is a need for the Ministry of Education and Training to craft an inclusive curriculum in line with the inclusive policy in order to cater for the diverse educational needs of all learners in mainstream schools. It is thought that instituting a vibrant in-service and pre-service teacher training programme by the Ministry of Education and Training will increase teachers’ capacity to a level where teaching in inclusive classrooms does not negatively affect their competence.
Exploring the concerns of persons with disabilities in Western Zambia
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Background: Understandings of disability are rooted in contexts. Despite the world’s significant contextual diversity, postcolonial power dynamics allow influential actors from the global North to imagine that most people across the global South understand disability in one generalised way. When it informs programmes and services for persons with disabilities in the global South, this imagining of a single generalised view could reduce effectiveness while further marginalising the people for whom the programmes and services were designed.
Objectives: In the interest of better understanding a contextually grounded meaning of disability, we explored the expressed concerns of two organisations of persons with disabilities and their members in Western Zambia.
Method: In this qualitative constructionist study, data collection focused upon life with a disability and servicesavailable to persons with disabilities. Data were collected through 39 individual interviews and eight focus group discussions with 81 members of organisations of persons with disabilities. Data were analysed thematically.
Results: The participants’ main expressed concern was poverty. This concern was articulated in terms of a life of suffering and a need for material resources. Participants linked poverty to disability in two ways. Some participants identified how impairments limited resource acquisition, resulting in suffering. Others considered poverty to be an integral part of the experience of disability.
Conclusion: This study contributes to literature on disability theory by providing a contextually grounded account of a particular understanding of disability and poverty. The study also contributes to disability practice and policymaking through the demonstration of poverty as the main concern of persons with disabilities in this context.
Barriers and Facilitators for Wheelchair Users in Bangladesh: A Participatory Action Research Project
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Purpose: People who use wheelchairs face a range of physical, social, and economic barriers to regular participation in their communities. These barriers may be more acute in countries such as Bangladesh which are affected by poverty and often lack the physical infrastructure or resources necessary to create inclusive or accessible environments. This research aimed to identify: (a) the barriers and facilitators to accessibility faced by wheelchair users in Bangladesh; (b) how these barriers affect the inclusion of wheelchair users in Bangladeshi society; and (c) what could be done to improve accessibility and inclusion for wheelchair users in Bangladesh.
Methods: This participatory action research (PAR) project used Photovoice and semi-structured interviews to identify barriers and facilitators to accessibility for people who use wheelchairs in Bangladesh.
Results: Participants mentioned a number of barriers in public spaces, such as roads, missing or inadequate ramps, inaccessible restrooms, and negative attitudes. There were also participants who had made their home environments more accessible with accommodations such as ramps, arrangement of space, and low countertops/work spaces. Women wheelchair users seemed to face greater barriers to access, as compared to men, in a range of community spaces and activities. Participants’ recommendations for improvement targeted government stakeholders and included greater focus on road infrastructure, particularly during flooding in the rainy season, and modifications to the public transportation system.
Conclusion: A key goal of the study was to identify barriers and facilitators, and use the information gathered to promote social change on the ground. Future research and action should encourage more people to get involved in removing barriers for people with disabilities, in Bangladesh as well as globally
Lived Experience of Psychosocial Disability and Social Inclusion: A Participatory Photovoice Study in Rural India and Nepal
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Purpose: This study aimed to investigate the experiences of people living with a psychosocial disability in rural India and Nepal, and to highlight key barriers and enablers for inclusion.
Method: Participatory action research approaches and Photovoice methodology were employed to investigate the lived experience of 32 participants in rural India and Nepal. There were 12 participants and 4 caregivers of people with psychosocial disability from each of the two countries. Semi-structured interviews with study participants were transcribed and analysed thematically to answer the study question.
Results: The findings revealed themes related to various supports, meaningful engagement in activity, and community awareness. Among these categories were both enabling and impeding factors to inclusion, the presence or absence of which was typically associated with improvements or worsening of symptoms respectively.
Conclusions and Implications: This study underscores the need for integrated community-based approaches that are multisectoral, inclusive of family, and strengthen community responses. Photovoice was also shown to be a feasible research methodology for providing insights into the lived experience of people with psychosocial disability and for fostering their empowerment
A Cross-sectional Survey of Rehabilitation Service Provision for Children with Brain Injury in Selangor, Malaysia
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Purpose: Rehabilitation services in Malaysia are provided by both governmental and non-governmental agencies but there are challenges, such as the lack of integration between agencies, and accessibility barriers to services especially for the population of urban poor and people in the rural areas. With the help of a survey, this project aimed to gain a better understanding of rehabilitation services provided for children with brain injury within the state of Selangor and Federal Territories of Kuala Lumpur and Putrajaya.
Method: A list of 205 organisations that provide rehabilitation services for children with neurological injuries was compiled. The researchers attempted to verify the services by visiting the facilities or via telephone or email communication if visits were not possible.
Results: The researchers were able to verify 83% of the organisations identified. There are 40 hospitals and 17 service providers for acute and / or chronic physical rehabilitation services for persons with disabilities of all ages, including children.
Conclusion: Findings showed the unequal distribution of rehabilitation service provision by districts. Service providers were concentrated in the urban areas. Setting up new healthcare facilities is one of the solutions but the costs for development, construction, and manpower could be high. An alternative solution is proposed, namely, the use of a home-based virtual rehabilitation programme.
Governmentality of disability in the context of lifelong learning in European Union policy
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The possibility to participate in education and lifelong learning has been introduced in EU disability policy in recent decades as one of the key means to improve the socioeconomic position of disabled persons. Simultaneously, lifelong learning has been developed as the defining concept of EU education policy to increase social cohesion and economic competitiveness. However, the education, employment rate and socioeconomic status of disabled persons have remained far below the EU average. In this article, we theo- rize governmentality to explore (1) how EU lifelong learning and disability policy discourses constitute and govern disabled persons and (2) how disabled persons are positioned in the policy dis- courses. The data consist of the most relevant EU policy documents concerning lifelong learning and disability policy in the twenty-first century. We argue that the policies constitute and govern disabled persons as a group who do not fulfil the premises set for the lifelong learner, and that consequently, policy dis- courses marginalize disabled persons instead.
Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis
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Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS.
Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3–5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed.
Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to “time-consuming” exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of person-centred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring.
Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions.
Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers
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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.
Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.
Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.
Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.
“Even the fowl has feelings”: access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia
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Background: Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities.
Methods: We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors.
Results: Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and – by denying their circumstances – leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities.
Discussion: We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response.
Conclusions: HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability.
What do Dutch general education teachers do to facilitate the social participation of students with SEBD?
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Few studies have addressed the daily practice of applied teacher strategies aimed at facilitating the social participation of students with social-emotional problems or behavioural difficulties (SEBD). In this paper, we present two interlinked studies that address this topic. The main study reports on the development of the Teacher Strategy Questionnaire on Social Participation in the Classroom (TSQ-SPC). We tested the questionnaire’s construct validity by performing a second-order confirmatory factor analysis. The follow-up study presents the results of a survey of 163 Dutch general primary education teachers of inclusive classes using a modified version of the TSQ-SPC. It provides insights on the strategies that teachers apply in their daily practice to facilitate positive social participation of students with SEBD. The findings of both studies suggest that general primary education teachers apply a limited repertoire of strategies. Accordingly, there is an urgent need for further research focusing on the development of interventions and revisions of the pre- and in-service teacher development curricula aimed at adequately supporting and preparing general education teachers.
Analysing disability policy in Namibia: An occupational justice perspective
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Background: The Namibian disability policy of 1997 has not been reviewed for about 20 years, which has raised concerns with persons with disabilities and stakeholders in the fields of disability and rehabilitation. In March 2017, the government publicised its intention to review the policy. Thus, this study’s purpose was to generate evidence that can contribute to the development of a more current disability policy that will promote occupational justice.
Objectives: The aim of the study was to develop an alternative disability policy option for Namibia and to present outcomes and trade-offs using a policy analysis approach while applying the occupational justice framework to gather evidence.
Method: A qualitative research design and Bardach’s eightfold path approach to policy analysis were used. Critical disability theory provided the theoretical framework. The occupational justice framework was the conceptual framework for the study. Evidence from preceding phases of this study and appropriate literature was utilised to construct possible disability policy alternatives in Namibia, set evaluative criteria, project outcomes and confront trade-offs.
Results: Three main disability policy alternatives emerged: access policy, support policy and universal coverage policy. Access policy had the fewest trade-offs, and the support policy had the most trade-offs in the Namibian context. Access policy was projected to foster occupational participation among persons with disabilities.
Conclusion: Results have implications for selecting disability policy alternatives that promote occupational participation and justice among persons with disabilities in Namibia. Furthermore, the study has implications for advancing the practice of occupational justice in disability policy formulation.
Anticipated Barriers to Implementation of Community-Based Rehabilitation in Ribeirão Preto, Brazil
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Purpose: Disability is a global health and a global development concern. To address both issues, a community-based rehabilitation (CBR) approach is increasingly recommended to meet a spectrum of needs, especially for people with disabilities. It is first necessary to understand the perceptions of local, frontline providers, in order to design effective measures for implementing CBR programmes. This paper aimed to understand the conceptions of Primary Healthcare Providers (PHPs) - serving a sub-urban, socially-vulnerable territory in Brazil - about: 1) disability, 2) rehabilitation, and 3) the possible local implementation of a CBR strategy, including any anticipated barriers.
Method: Cross-sectional, exploratory qualitative research was based on focus groups conducted between 2013 and 2016. It involved a total of 78 PHPs serving the western region of the Ribeirão Preto municipality in São Paulo, Brazil. Data analysis was based on Habermas’ critical hermeneutics approach.
Results: PHPs understood disability mostly within the biomedical paradigm. Similarly, the predominant conception of rehabilitation was focussed on enabling individuals’ capacity, more than their environment. For local CBR implementation, the barriers that were anticipated were: 1) difficulties in managing and running action across sectors, and 2) the broader socio-political environment that hardly empowers civil society and is affected by power differentials.
Conclusion and Implications: While local PHPs identified important CBR implementation barriers which are contextual in nature, the predominant conceptions of disability and rehabilitation (i.e., biomedical, impairments-based) also act as a barrier. Contextual and cognitive barriers must both be addressed when envisioning a local CBR implementation
Parental Perceptions, Attitudes and Involvement in Interventions for Autism Spectrum Disorders in Sarawak, Malaysia
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Purpose: This study explores and compares perspectives of educators and parents regarding interventions used in managing Autism Spectrum Disorder (ASD) in Sarawak, Malaysia. Information on parental desires and limitations when selecting and maintaining management will aid in the development of strategies for ASD educators to work effectively with parents and caregivers, and vice versa.
Method: This qualitative research employed traditional question and answer interviews with 7 ASD educators and 30 parents. Interviews were semi-structured and questions were open-ended to allow for additional details to be relayed within the scope of the subject matter. Thematic analysis revealed overarching perceptions concerning parental attitudes towards involvement in their children’s interventions, and implications of cultural context.
Results: Perspectives were similar regarding the importance of confidentiality from educators and cultural factors playing a major role in content of intervention chosen by parents. Perspectives differed across four themes. Of significance was the way in which both samples viewed parental self-reliance in supplementing interventions and parental attitudes in effort and perseverance.
Conclusion: Parental resources and culture influence ability and attitudes towards involvement. While educators may not agree on certain aspects, mutual appreciation of differing perspectives would benefit the children.
Utilisation and Satisfaction with Health Services among Persons with Disabilities in Accra, Ghana
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Purpose: Healthcare, one of mankind’s basic needs, is generally accessible to persons without disability, but people with disabilities are marginalized and stigmatized in developing countries and as such are unable to utilise the health services they require. The health-related Sustainable Development Goals (SDGs) talk about good health and well-being, and about reducing inequality in societies. In South Africa and Ghana, constitutional provisions and policies have been made for inclusion and for reducing inequality among persons with disabilities, but implementation is still in its infancy. The aim of this study is to determine the level of utilisation and satisfaction with health services among persons with disabilities, and to recommend strategies to improve the current situation in the country.
Method: A non-interventional, descriptive cross-sectional study was employed, with a quantitative data collection method. A structured questionnaire comprising of both open- and closed-ended questions was used for the data collection. A total of 363 respondents were involved in the study – 360 were persons with disabilities, and 3 were key informants.
Results: While A total of 66.9% of persons with disabilities reported being warmly received by health professionals, 23.1% reported encountering a cold attitude, and 5.6% reported being scorned at health facilities. Only 20.5% of persons with disabilities reported frequent visits to health facilities, 42.8% did not visit health facilities frequently, and 36.4% rarely visited a health facility. Moreover 76.4% reported that they made hospital visits for all their ailments.
Conclusion: Although health facilities were utilised by few persons with disabilities, the majority of respondents reported that they were well-received there and as such would visit health facilities for all their medical needs.
Implications: Persons with disabilities should be included in all areas of society by spreading awareness about their abilities. Partnerships between persons with disabilities and the government and other non-governmental organization’s should be established, to mainstream health services to meet their general and specific needs. It is increasingly important that persons with disabilities play an active role in managing their healthcare needs.
Prioritizing barriers and solutions to improve employment for persons with developmental disabilities
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Purpose: Persons with a developmental disability have the lowest rate of labour force participation relative to other disabilities. The widening gap between the labour force participation of persons with versus without disability has been an enduring concern for many governments across the globe, which has led to policy initiatives such as labour market activation programs, welfare reforms, and equality laws. Despite these policies, persistently poor labour force participation rates for persons with developmental disabilities suggest that this population experiences pervasive barriers to participating in the labour force.
Materials and methods: In this study, a two-phase qualitative research design was used to systematically identify, explore and prioritize barriers to employment for persons with developmental disabilities, potential policy solutions and criteria for evaluating future policy initiatives. Incorporating diverse stakeholder perspectives, a Nominal Group Technique and a modified Delphi technique were used to collect and analyze data.
Results: Findings indicate that barriers to employment for persons with developmental disabilities are multi-factorial and policy solutions to address these barriers require stakeholder engagement and collaboration from multiple sectors.
Conclusions: Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Policy and decision makers need to address barriers to employment for persons with developmental disabilities more holistically by designing policies considering employers and the workplace, persons with developmental disabilities and the broader society. Findings call for cross-sectoral collaboration using a Whole of Government approach.
Assistive technology products: a position paper from the first global research, innovation, and education on assistive technology (GREAT) summit
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This paper is based on work from the Global Research, Innovation, and Education on Assistive Technology (GREAT) Summit that was coordinated by WHO’s Global Cooperation on Assistive Technology (GATE). The purpose of this paper is to describe the needs and opportunities embedded in the assistive product lifecycle as well as issues relating to the various stages of assistive product mobilization worldwide.
The paper discusses assistive technology product terminology and the dangers of focusing on products outside the context and rolling out products without a plan. Additionally, the paper reviews concepts and issues around technology transfer, particularly in relation to meeting global needs and among countries with limited resources. Several opportunities are highlighted including technology advancement and the world nearing a state of readiness through a developing capacity of nations across the world to successfully adopt and support the assistive technology products and applications.
The paper is optimistic about the future of assistive technology products reaching the people that can use it the most and the excitement across large and small nations in increasing their own capacities for implementing assistive technology. This is expressed as hope in future students as they innovate and in modern engineering that will enable assistive technology to pervade all corners of current and potential marketplaces. Importantly, the paper poses numerous topics where discussions are just superficially opened. The hope is that a set of sequels will follow to continue this critical dialog.
Maintaining professional integrity: experiences of case workers performing the assessments that determine children’s access to personal assistance
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This qualitative study explores Swedish case workers experiences of decision making regarding disabled children's right to obtain assistance in their everyday life whereby they can live independently in the community. Data collection included seven focus-group interviews and 11 complementary individual interviews with case workers from different agencies responsible for decisions regardig access to personal assistance. Grounded theory methodology was used. Compromised professional integrity under shifting conditions emerged as a main concern and maintaing professional integrity was used as an approach to resolve it. The case workers are maintaining professional integrity by applying different strategies; struggling with division of responsibility, bureaucratizig, and justifying and protecting. The results indicate that present application of assessment criteria in combination with the utilization of precedent rulings has made it difficult for the case workers to make decisions that provide children access to assistance. Current practice raises questions about the case workers perspectives of professionalism.
Assistive technology provision: towards an international framework for assuring availability and accessibility of affordable high-quality assistive technology
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Purpose: This is a position paper describing the elements of an international framework for assistive technology provision that could guide the development of policies, systems and service delivery procedures across the world. It describes general requirements, quality criteria and possible approaches that may help to enhance the accessibility of affordable and high quality assistive technology solutions.
Materials and methods: The paper is based on the experience of the authors, an analysis of the existing literature and the inputs from many colleagues in the field of assistive technology provision. It includes the results of discussions of an earlier version of the paper during an international conference on the topic in August 2017.
Results and conclusion: The paper ends with the recommendation to develop an international standard for assistive technology provision. Such a standard can have a major impact on the accessibility of AT for people with disabilities. The paper outlines some the key elements to be included in a standard.
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