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A conceptual framework for designing Ambient assisted living services for individuals with disabilities in Uganda and South Africa

KYAZZE, Michael
WESSON, Janet
NAUDE, Kevin
August 2019

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Background: Individuals with disabilities experience difficulty in using various everyday technologies such as computers and smartphones.

 

Objectives: To propose a conceptual framework that will lead to the development of practical and user friendly assistive technology.

 

Method: A literature review of challenges faced by individuals with physical disabilities was carried out. Interviews with adults with physical disabilities in Kampala, Uganda, and Port Elizabeth, South Africa, identified three main challenges with regard to using technology: using a mobile phone, controlling an electronic environment and using a computer.

 

Results: The challenges identified can be solved by taking into consideration the needs of individuals with disabilities. However, the design of new technologies and interaction techniques, such as natural hand gestures and voice, as input mechanisms has able-bodied individuals in mind. Individuals with disabilities are considered as an afterthought. The main reason for this is that individuals with a disability are a minority and hence it may not make economic sense for technology innovators to cater for their unique needs. A lack of practical guidelines on how to design for individuals with disabilities is another reason why designing for individuals with disabilities is often an afterthought.

 

Conclusion: This article proposes a conceptual framework that can be used by researchers and technology designers in order to design products that could cater for the unique needs of individuals with disabilities. The article also emphasises the importance of exploring alternative interaction techniques, as they could enable individuals with disabilities to fully utilise technologies such as smart phones, computers and smart home electronics.

 

 

African Journal of Disability, Vol 8, 2019

Assistive technology enables inclusion in higher education: The role of Higher and Further Education Disability Services Association

LYNER-CLEOPHAS, Marcia
August 2019

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Background: Using assistive technology is one way to foster inclusion of students in the post-school education and training (PSET) sector.

 

Objectives: Higher and Further Education Disability Services Association (HEDSA) enables the sharing of new knowledge about assistive technologies through its symposia, and making information available on its website. Additionally, it facilitates dialogue and collaboration amongst institutions in the PSET network using a listserv and newsletters, given that PSET institutions are spread countrywide.

 

Method: This is an article based on a presentation at the 5th African Network of Evidence-to-Action in Disability (AfriNEAD) conference in Ghana in 2017 that focused on the value of assistive technology for students pursuing studies in the PSET sector and the role played by HEDSA in South Africa.

 

Results: The positive gains and existing gaps in disability inclusion in the higher education sector in South Africa are highlighted, with reference to access to technology. All higher education institutions have internet access and can thereby make use of listservs to communicate information. MapAbility is a way that prospective students can gain a snapshot view of available resources at institutions of learning, using the internet.

 

Conclusion: An association such as HEDSA plays a critical role in the PSET sector to enhance disability inclusion using online tools to disseminate information.

 

 

African Journal of Disability, Vol 8, 2019

The Convention on the Rights of Persons with Disabilities and the Islamic Tradition: The question of legal capacity in focus

GHALY, Mohammed
2019

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Legal capacity of persons with mental disabilities was a con- tentious issue during the process of drafting the Convention on the Rights of Persons with Disabilities. The Arab Group, consisting of Muslim-majority countries, in the United Nations expressed reservations about the formulation of the Article related to this issue. However, their reservations were dis- missed because they arguably had to do with language-specificity. The author revisits these deliberations and argues that the reservations of the Arab countries have to do with reli- gious aspects rooted in the Islamic tradition. By ignoring these religious aspects, the Disability Convention missed a rich source of wisdom provided by a world religion like Islam. On the other hand, the innovative insights provided by the Disability Convention can be of value to improve contemporary discussions on legal capacity within the Islamic tradition. Unlike the previous studies, which either focused on the approach of the Disability Convention or that of the Islamic tradition, this study examines both approaches and highlights the points of agree- ment and disagreement and finally proposes suggestions for narrowing the existing gap between these two approaches.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Labour Market Assessment - Inclusion Works Nigeria

Prof ADEBAYO, A. A.
SHIBKAU, Hadjara
OLIYE, Funmilayo
July 2019

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This labour market assessment (LMA) was important to ensure the Inclusion Works programme interventions are strategic and provide the most optimal way to address unemployment challenges facing persons with disabilities. This LMA was designed to answer key questions associated with perspectives on: policy; coordination systems; employer; training and recruitment service providers; and job seekers. To address the questions, the assessment attempted to identify; the growing sectors and job opportunities in Lagos, Abuja and Jigawa States, the demand and supply of skills for enabling persons with disabilities to compete for current and future job opportunities, and understanding barriers for employers and persons with disabilities with regards to disability inclusive formal employment while focusing on both current and future opportunities in formal and informal sectors.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Labour Market Assessment - Inclusion Works Kenya

GESONGO, Mugita
BARAZA, Austen
July 2019

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This is a rapid assessment of the Kenyan labour market which was commissioned to understand how the labour market functions in Kenya within the context of disability. This assessment provided opportunity to validate existing data on employment of persons with disabilities thus generating a solid baseline on which to anchor the programme’s targets and assumptions.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Teaching disability: strategies for the reconstitution of disability knowledge

DÍAZ, Karim Del Rocío Garzón
GOODLEY, Dan
2019

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As teachers of disability studies, working with students from the health and psychological sciences, we tackle some of our pedagogical challenges and offer productive possibilities. We begin by introducing the offerings of disability studies and then consider our first question: how might we invite disability into our teaching? We introduce a Spanish tale – Por cuatro esquinitas de nada – that, while aimed at children and not explicitly engaged with a disability, permits us to engage in inter-textual analyses of disability. We find that students move through different stages of what we term distinction, idealisation and invisibility/concealment. We then address our second question – what does it mean to teach disability? We answer this with reference to the generative practices of two teaching methodologies: disposal and disavowal. We conclude the paper by considering the importance of generating critical theories of disability.

Supporting the enactment of inclusive pedagogy in a primary school

BRENNAN, Aoife
KING, Fiona
TRAVERS, Joe
2019

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While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.

Patient and caregiver experiences on care transitions for adults with a hip fracture: a scoping review

ASIF, Maliha
CADEL, Lauren
KULUSKI, Kerry
EVERALL, Amanda C
GUILCHER, Sara J T
May 2019

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Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care.

 

Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched.

 

Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement.

 

Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility.

The use of information and communication technology in healthcare to improve participation in everyday life: a scoping review

ZONNEVELD, Michael
PATOMELLA, Ann-Helen
ASABA, Eric
GUIDETTI, Susanne
April 2019

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Background and purpose: The increase in use of everyday information and communication technologies can lead to the need for health professionals to incorporate technology use competencies in practice. Information and communication technologies has the potential to improve participation in daily life among people with disability. The aim was to review and describe evidence of the use of information and communication technology, including mobile technology, for improving participation in everyday life. A secondary aim was to describe how study outcomes were related to participation.

 

Materials and methods: A scoping review methodology was used to identify studies through databases as MEDLINE, CINAHL, Cochrane Library. Thereafter, the studies were screened and assessed for inclusion.

 

Results: Eleven studies were included. The most commonly used technology were videoconferencing and the telephone. Ten of the 11 studies reported a change in participation in everyday life. Participation was mainly described as involvement in a life situation or related to activities of daily living.

 

Conclusion: Delivering an intervention to improve participation through information and communication technology can be a valid option in rehabilitation. There is a need to measure and describe the intervention and its outcomes in relation to a definition of participation in future studies.

Provocations for Critical Disability Studies

GOODLEY, Dan
LAWTHOM, Rebecca
LIDDIARD, Kirsty
RUNSWICK-COLE, Katherine
2019

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This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

‘Power-Hurt’: The Pains of Kindness Among Disabled Karen Refugees in Thailand

COLE, Tomas
2019

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In this paper I show how, for many Karen living as refugees in ‘temporary-shelter-areas’ in Thailand, acts of care and kindness often slipped into something painful and controlling. Drawing on fieldwork among Karen refugees disabled by landmines I show how asking for and receiving help was almost always accompanied by the visceral sensation of ana, literally, ‘power hurt’. On the one hand, ana was the force driving the circulation of care and kindness, provoking people to help others. On the other hand this circulation also carried with it the constant potential to compromise not only the recipient’s but also the donor’s ‘power’, which was understood as their capacity to have an effect on the world. In this manner ana may offer us with a way to grasp the ethical-affective basis of a social arrangement that slips smoothly between lateral solidarities and vertical hierarchical relations allowing egalitarianism and hierarchy to co-exist.

Problematizing ‘productive citizenship’ within rehabilitation services: insights from three studies

FADYL, Joanna K
TEACHMAN, Gail
HAMDANI, Yani
March 2019

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Background: The idea that everyone should strive to be a ‘productive citizen’ is a dominant societal discourse. However, critiques highlight that common definitions of productive citizenship focus on forms of participation and contribution that many people experiencing disability find difficult or impossible to realize, resulting in marginalization. Since rehabilitation services strive for enablement, social participation, and inclusiveness, it is important to question whether these things are achieved within the realities of practice. Our aim was to do this by examining specific examples of how ‘productive citizenship’ appears in rehabilitation services.

 

Methods: This article draws examples from three research studies in two countries to highlight instances in which narrow understandings of productive citizenship employed in rehabilitation services can have unintended marginalizing effects. Each example is presented as a vignette.

 

Discussion: The vignettes help us reflect on marginalization at the level of individual, community and society that arises from narrow interpretations of ‘productive citizenship’ in rehabilitation services. They also provide clues as to how productive citizenship could be envisaged differently. We argue that rehabilitation services, because of their influence at critical junctures in peoples’ lives, could be an effective site of social change regarding how productive citizenship is understood in wider society.

Training Needs of Community-based Rehabilitation Workers for the Effective Implementation of CBR Programmes

VUUREN, Julia Mary Jansen-van
ALDERSEY, Heather Michelle
2019

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Purpose: This review investigates the training needs of Community-Based Rehabilitation (CBR) workers that would enable them to effectively facilitate CBR programmes. Emphasis was placed on identifying: (a) the skills that CBR workers require (b) the training currently available for them, and (c) the gaps in current training.

 

Method: A scoping review was conducted using on-line database searches (Medline, Embase, Cinahl, PsycInfo, Global Health) for English articles from 2006 onwards. A combination of keywords related to CBR, personnel, and training were applied. Hand searches of reference lists and the DCID journal were also conducted. Grey literature related to training, from the World Health Organisation (WHO), CBR Regional Networks and organisations affiliated with CBR were included as secondary data. Thirty-three articles and thirty-five sources from the grey literature were included. Data was organised under the three objectives outlined above – i.e., required skills, available training and training gaps.

 

Results: CBR workers represent a diverse group requiring a broad range of skills. A new cadre of mid-level workers is also necessary to effectively implement the CBR guidelines. There is currently no standardised training for CBR workers and training varies widely, depending on context. CBR workers require further training in various clinical, social, management, communication, and cultural competence skills across the spectrum of the CBR Matrix, and specifically in empowering persons with disabilities and facilitating community development. They also need to develop critical reasoning, creativity, and compassion.

 

Conclusion: A standardised approach to training CBR workers would be beneficial to ensure basic standards and quality services, to allow meaningful comparison and evaluation across contexts, to recognise the role of mid-level CBR workers, and to strengthen the workforce. Further research is required to determine minimal competencies, define the roles of various CBR workers, and evaluate the effectiveness of training.

Pedagogical Relational Teachership (PeRT) – a multi-relational perspective

LJUNGBLAD, Ann-Louise
2019

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This article presents a theoretical relational perspective of education, Pedagogical Relational Teachership (PeRT), which supports the development of new knowledge about teachers’ relational proficiencies to create opportunities for students to participate in their education and to emerge as unique individuals and speak with their own voices. Within the field of inclusive education, it is a relational approach where teaching is to be understood relationally. The fundamental bases in this inclusive perspective on education are the Convention on the Rights of the Child and the Salamanca Statement. The concept of relational teachership is elaborated on to emphasise the importance of teachers’ relational proficiencies in the classroom. The article also clarifies how PeRT includes a multi-dimensional model to illuminate relational processes and relationships on different levels within the educational system. PeRT is a relational approach for scholars and practitioners, which can be seen as a new beginning and an invitation to a relational pathway that explores participation, accessibility and equity.

Community-Based Rehabilitation programming for sex(uality), sexual abuse prevention, and sexual and reproductive health: A scoping review

SCHINDELER, Tamara Lee
ALDERSEY, Heather
2019

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Purpose: The United Nations Convention on the Rights of Persons with Disabilities aims to protect the human rights and dignity of all people with disabilities. In low-and middle-income countries (LMICs), one way this goal is pursued is through Community-Based Rehabilitation (CBR), a strategy to support the full and equal participation of people with disabilities. In spite of policy and community-based interventions, people with disabilities continue to experience inequities in many areas of life - one of these being their sexual and reproductive health (SRH) rights. This scoping review explored the literature to understand how CBR programming has supported sex(uality), sexual abuse prevention, and SRH for people with disabilities.

 

Methods: Arksey and O’Malley’s (2007) framework was used to identify relevant studies in academic and grey literature. This included six databases, the WHO website, and five Regional CBR Network websites. Relevant studies were selected using criteria and data was charted to examine the quantity, variation, and nature of CBR interventions.

 

Results: Fifteen studies were identified. The majority were implemented in Africa; targeted all people with disabilities, regardless of gender, age, or type of disability; and frequently focussed on the topic of HIV/AIDS.  The interventions were most commonly designed to educate people with disabilities on issues of sex(uality), sexual abuse prevention, or SRH.

 

Conclusion: A number of studies discussed CBR programmes that aim to support sex(uality), sexual abuse prevention and SRH for people with disabilities, yet gaps were identified that indicate that certain populations and topics are being overlooked by CBR interventions.

 

Implications: CBR practitioners can focus on filling the gaps identified in this review through future programming. Further action must concentrate on implementing a variety of CBR Matrix strategies to address comprehensive issues related to sex(uality), sexual abuse prevention, or SRH.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Impact of parenting a child with cerebral palsy on the quality of life of parents: A systematic review of literature

RAMANANDI, Vivek H
PARMAR, Trupti Rudra
PANCHAL, Juhi Kalpesh
PRABHAKAR, M M
et al
2019

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Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.

 

Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

 

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Strengthening personal and family resilience: a literature review for the leprosy context

VAN'T NOORDENDE, Anna Tiny
KUIPERS, Kim
PEREIRA DSZ B
January 2019

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 A literature review was conducted to identify core elements of interventions to promote resilience in individuals and family members in the face of discrimination in the case of leprosy. A multi-phase adapted scoping review of English literature and a narrative review of the Portuguese language literature were carried out. Three main intervention focus areas in our review were identified: individual level, social/community level and system level.

 

Lepr Rev (2019) 90, 88–104

Rapid review of disability and older age inclusion in humanitarian WASH interventions

RICHARD, Danielle
KIANI, SHIRIN
January 2019

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A knowledge gap in good practices and innovation for how people with disabilities and older people are included in water, sanitation and hygiene (WASH) interventions in humanitarian contexts prompted this review. To promote inclusive humanitarian action, the Age and Disability Capacity Programme (ADCAP) consortium developed the Humanitarian Inclusion Standards (HIS). The HIS consists of nine key inclusion standards and sets sector specific standards, including for the WASH sector. The WASH inclusion standards are structured around three key dimensions of inclusion: 1) Collection of Information, 2) Addressing Barriers and 3) Participation and Resilience. This report provides key actions, trends and gaps for each of these dimensions. The report is based on a literature review and a small number of key informant iterviews.

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