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Content and Quality of Motor Initiatives in the Support of People With Profound Intellectual and Multiple Disabilities
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Motor activation is rarely integrated into the support of people with profound intellectual and multiple disabilities (PIMD), which might be the result of the limited evidence-based knowledge in this field. Practitioners have recently been developing several motor initiatives for people with PIMD, but it remains unclear about what core elements the motor initiatives actually consist of and to what level of quality it is implemented in practice. This study aims to offer an overview and analysis of the content and quality of motor initiatives actually in use for people with PIMD. Motor initiatives were explored by asking practitioners to complete an online inventory form. Documents, expert knowledge, and observations were used to collect data about the characteristics of the motor initiatives. The quality of the motor initiatives which met our eligibility criteria, was analyzed on the basis of the level of evidence for their effectiveness. The inventory yielded 118 motor initiatives of which 17 met the eligibility criteria. We identified four motor initiatives reflecting an approach to motorically activate people with PIMD within various activities, three including power-assisted exercises, three with aquatic exercises, two frameworks which integrated motor activities into their daily programs, two methods which included small-scale activities, two rhythmic movement therapies, and one program including gross motor activities. We found limited indications for descriptive evidence from 17 initiatives, limited or no indications for theoretical evidence from 12 and five initiatives respectively, and none of the initiatives provided a causal level of evidence for effectiveness. A wide variety of motor initiatives is used in current practice to activate persons with PIMD, although their effectiveness is actually unproven. Science and practice should cooperate to develop an evidence-based understanding to ensure more evidence-based support for the motor activation of people with PIMD in the future.
TT Tracker app aims to improve surgical outcomes and patient care
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Trichiasis (TT) operations are generally conducted in remote and resource-poor settings, which can make it difficult to follow-up and assess surgical outcomes. Sightsavers developed an Android-based mobile phone application, called the TT Tracker, which helps surgeons, assistants and supervisors to collect and analyse information about surgical outcomes and performance, and to determine when and where follow-up appointments are required.
Community Eye Health. 2019; 31(104): 93.
How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge
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Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff’s perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions.
Objectives: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers).
Method: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection.
Results: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered.
Conclusion: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children’s hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.
African Journal of Disability, Vol 8, 2019
Preferences regarding the way of use and design of a work ability prognosis support tool: a focus group study among professionals
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Purpose: To explore the preferable way of use and design of a work ability prognosis support tool for insurance physicians (IPs) and labour experts (LEs), based on a prediction model for future changes in work ability among individuals applying for a work disability benefit.
Methods: We conducted three focus groups with professionals of the Dutch Social Security Institute (17 IPs and 7 LEs). Data were audio recorded and qualitatively analysed according to the main principles of thematic analysis.
Results: Clarity and ease of use were mentioned as important features of the tool. Most professionals preferred to make their own judgement during the work disability assessment interview with the claimant and afterwards verify their evaluation with the tool. Concerning preferences on the design of the tool, dividing work disability claimants into categories based on the outcome of the prediction model was experienced as the most straightforward and clear way of presenting the results. Professionals expected that this encourages them to use the tool and act accordingly.
Conclusions: The tool should be easy to access and interpret, to increase the chance that professionals will use it. This way it can optimally help professionals making accurate prognoses of future changes in work ability.
Social insurance literacy: a scoping review on how to define and measure it
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Purpose: Sickness insurance and workers’ compensation systems decide on peoples’ eligibility for benefits, and are commonly based on medical certificates and assessments of work ability. Systems differ in the extent to which they preserve clients’ dignity and right to fair assessments. In this article, we define a new concept for studying interactions between individuals and systems: social insurance literacy, which concerns how well people understand the different procedures and regulations in social insurance systems, and how well systems communicate with clients in order to help them understand the system.
Methods: The concept was defined through a scoping literature review of related concepts, a conceptual re-analysis in relation to the social insurance field, and a following workshop.
Results: Five related concepts were reviewed for definitions and operationalizations: health literacy, financial/economic literacy, legal capability/ability, social security literacy, and insurance literacy.
Conclusions: Social insurance literacy is defined as the extent to which individuals can obtain, understand and act on information in a social insurance system, related to the comprehensibility of the information provided by the system. This definition is rooted in theories from sociology, social medicine and public health. In the next step, a measure for the concept will be developed based on this review.
Bridging the mobile disability gap in refugee settings
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This case study highlights refugees with disabilities’ access to mobile services and the benefits and challenges associated with using these services in three different humanitarian contexts. The analysis is based on a representative survey of refugees in three contexts: Bidi Bidi refugee settlement (Uganda), Kiziba refugee camp (Rwanda) and with urban refugees in Jordan. It also includes qualitative data drawn from two focus groups conducted with refugees with disabilities in Bidi Bidi and Kiziba. The survey used the Washington Group Questions (WGQs) to assess prevalence of disability amongst the refugee population
A conceptual framework for designing Ambient assisted living services for individuals with disabilities in Uganda and South Africa
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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
National Conference on Assistive Technology for All 2030, Bengaluru, India, August 2-3, 2019
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The National Conference on Assistive Technology for All – 2030 was held in Bangalore on August 2 – 3, 2019 in celebration of 25 years of Mobility India.
The conference involved 27 distinguished speakers and experts in the field from WHOSEARO, Ministry of SJ&E and the National Institutes, the IITs, IISc, Global Disability Innovation Hub, BIRAC, DEBEL, BeTIC, professional bodies, National Institute of Design, industry and NGOs.
The broad objective of the conference was to bring together all the relevant stakeholders to discuss, identify and agree on key steps to augment AT sector and develop a national AT alliance.
- Global Cooperation on Assistive Technology (GATE) and its relevance to India
- WHO Perspective on Assistive Technology
- Perspective from MSJ&E on Assistive Technology Provision in India
- Global Disability Innovation Hub and AT Innovation in India
- Role of AT in SCI-Healthy and Hygienic Bladder & Bowel Management
- Assistive Technology (AT) and Intellectual Disability (ID): Exploring the Underutilization of Technology for Persons with Intellectual Disabilities
- Humanitarian Emergency Response and Assistive Technology – ICRC Insight
- Assistive Technology in Geriatrics and Palliative Care
- Exploring Barriers to the Use of Assistive Technology for PWDs in India
- An in-depth user study on Problems Faced by Axillary Crutch Users in India
- “Perception towards use of Assistive Technology in Higher Education: A case study”
- A Wheelchair in Rural Bangalore: What do the Users think?
- Gaze-based Assistive Technologies
- Innovative Assistive Technology Solutions
- Human Resource Development and Assistive Technology
- Assistive Technologies in Universal Health Coverage
- AT in the Era of AI: How Advanced Technology is Influencing New Designs
- Independent Walker for Diplegic Cerebral Palsy Children
- Functional Electrical Stimulation for Drop Foot and/or Knee Instability
- Enabling Fabrication of Prosthetic and Orthotic Devices with Additive Manufacturing via Digital Transformation
- Innovations in Different Types of Biomedical Devices
- Universal Design
- Assistive Technologies: Idea to Invention to Innovation to Impact
- AT – Make in India
- Information and Communication Assistive Technology & Make in India
- A Guideline for Service and Delivery to Ensure Quality of Life of Elderly People
- User-Centred Approach in Creating Impactful Solutions for the Disabled
Guidelines. Inclusion of persons with disabilities in humanitarian action
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The guidelines set out essential actions that humanitarian actors must take in order to effectively identify and respond to the needs and rights of persons with disabilities who are most at risk of being left behind in humanitarian settings. The recommended actions in each chapter place persons with disabilities at the centre of humanitarian action, both as actors and as members of affected populations. They are specific to persons with disabilities and to the context of humanitarian action and build on existing and more general standards and guidelines. These are the first humanitarian guidelines to be developed with and by persons with disabilities and their representative organizations in association with traditional humanitarian stakeholders. Based on the outcomes of a comprehensive global and regional multi-stakeholder consultation process, they are designed to promote the implementation of quality humanitarian programmes in all contexts and across all regions, and to establish and increase both the inclusion of persons with disabilities and their meaningful participation in all decisions that concern them.
Chapters include:
- What to do - key approaches to programming
- Data and information management
- Partnerships and empowerment of organisation of people with disabilities
- Cross cutting considerations
- Accountability to affected people and protection from sexual exploitation and abuse
- Humanitarian response options
- Stakeholder roles and responsibilities
- What sectors need to do
- Camp coordination and camp management
- Education
- Food security and nutrition
- Livelihoods
- Health
- Protection
- Shelter and settlements
- Water, sanitation and hygiene
Supporting the enactment of inclusive pedagogy in a primary school
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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.
Agriculture and mobile-based interventions for smallholder farmers: best practice on disability inclusion, Disability Inclusion Helpdesk Research Report No. 14
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This rapid review addresses the questions: What is current best practice in addressing disability and including people with disabilities within agricultural development programming? What is current best practice in mobile agriculture programming (i.e. mobile-based interventions targeted at smallholder farmers) to include smallholder farmers with disabilities as well as empower them and address key barriers they are facing?
Undergraduate physiotherapy students’ basic wheelchair provision knowledge: a pilot study in two universities in Colombia
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Purpose:
Access to an appropriate wheelchair is a human right. Only between 5–15% of people who need a wheelchair have access to one. One of the key barriers to access is the lack of appropriately trained rehabilitation professionals. The objective of this study was to evaluate basic manual wheelchair provision knowledge in final-year physiotherapy undergraduate students in two programs in Colombia.
Materials and methods:
Students took the International Society of Wheelchair Professionals Wheelchair Service Provision – Basic Test which was administered online and in Spanish. The minimum score to pass the test is 70%; it assesses seven domains: Assessment; Prescription; Products; Fitting; User training; Follow-up, maintenance, and repairs; and Process.
Results and conclusions:
One-hundred sixteen students took the test and no one passed the test. The highest median domain scores were in Assessment and Process while the lowest were in Fitting and Products. The limitations of this study include that this sample does not represent all physiotherapy programmes or students in Colombia, there may be potential errors in the Spanish translation of the outcome measure, and students encountered Internet connectivity issues during the test that may have impacted their scores. Immediate interventions are required to improve teaching and students’ learning outcomes related to basic manual wheelchair provision in these two programs. This study may serve as a foundation for future regional or national studies that assess the situation of wheelchair provision training in rehabilitation programs that will inform improvement actions. This manuscript is also available in Spanish as Supplemental Material.
Study on explosive hazard victim reporting and data management processes in Iraq
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Handicap International (HI) commissioned a study on on explosive hazard victim reporting and data management processes in Iraq. The overall objectives of the study were to:
- Understand what explosive hazard victim reporting and data management processes exist in Iraq;
- Identify who is collecting such information, for which reasons and how it is being shared, and how it is being officially used;
- Identify whether international victim data collection good practices and reporting standards are being followed up, and make concrete recommendations to help meet the standards;
- Understand the successes, shortfalls, and challenges in data collection and information sharing;
- Identify the needs of the data collection community in terms of ensuring sufficient victim reporting and data collection;
- Identify if and how the data on victims is being collected and used by government authorities and the international fora.
Desk research was carried out and data collection took place in March 2019 in Erbil, Baghdad and Ninewa governorates in Iraq. In total, the qualitative researcher spent 3 days in Erbil, 4 days in Baghdad, and 6 days in Ninewa governorate to conduct interviews through a snowball approach. In total, 22 interviews were conducted with a variety of stakeholders, including humanitarian mine action actors, government officials, hospital directors, police and community leaders. This report provides an overview of the main findings.
Guidance on strengthening disability inclusion in Humanitarian Response Plans
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This guidance provides support to seven UN entities on how to strengthen inclusion of disability in Humanitarian Response Plans (HRPs) as part of the UK Department for International Development (DFID) Humanitarian Investment Program. The aim of this work is to make humanitarian programming more responsive to the needs of people with disabilities affected by crisis. Humanitarian Response Plans are the product of a strategic planning process that is informed by humanitarian needs assessment activities. Therefore, this guidance focuses primarily on the steps in the humanitarian program cycle (HPC) leading to the HRP, including the process of developing the Humanitarian Needs Overview (HNO). This guidance has been aligned to the 2019 revision of this process
Rapport d’évaluation rapide de la situation des personnes handicapées nouvellement déplacées sur les sites de Awaridi, NGuel Madou Mai, Gorodi - Dalabouyari et Château à Diffa suite aux derniers incidents dans la commune du Gueskerou
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Rapid assessment report on the situation of people with disabilities newly displaced on Awaridi sites, NGuel Madou Mai, Gorodi - Dalabouyari and Castle in Diffa following the latest incidents in the commune of Gueskerou, Niger.
The evaluation focused on elements of qualitative analysis via collective interviews (focus groups), individual interviews and testimonials on the five selected sites. A total of 169 people were interviewed, through six focus groups and 70 individual interviews. These populations are essentially composed of disabled people, women and children displaced by recent security incidents in the country.
Urgent, short and medium term measures are identified
Disability inclusive approaches to humanitarian programming: Summary of available evidence on barriers and what works
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This rapid review identifies multiple factors that limit or exclude people with impairments from accessing humanitarian services and programming – including individual, attitudinal, environmental and institutional barriers
Multilingualism and augmentative and alternative communication in South Africa – Exploring the views of persons with complex communication needs
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Background: Augmentative and alternative communication (AAC) can assist persons with complex communication needs to communicate competently with a variety of communication partners in a variety of contexts. However, AAC systems and intervention often do not take multilingual aspects into consideration.
Objective: This small-scale exploratory study had three aims, namely: (1) to describe the self-reported language skills of multilingual South African adults using AAC, (2) to describe the languages and communication modalities they used in interaction and (3) to obtain their views regarding access to various languages.
Methods: Twenty-seven adults using AAC were recruited via an empowerment programme, as well as an email list for persons interested in AAC, and provided responses to a questionnaire. To compensate for access and written language challenges, the questionnaire was administered with help and/or as a face-to-face interview where needed. Responses were analysed using mostly descriptive statistics.
Results: Participants generally could not express themselves in all the languages they understood and were regularly exposed to. Speech-generating devices specifically gave access almost exclusively to English. Participants expressed a desire to increase their expressive language repertoire, and mentioned both limitations of communication technology as well as their own literacy skills as barriers to overcome in this regard.
Conclusion: In order for multilingual South African adults using AAC to express themselves in multiple languages, appropriate AAC systems and interventions as well as literacy learning opportunities need to be developed and provided.
African Journal of Disability, Vol 8, 2019
Lived experiences of caregivers of children with autism spectrum disorder in Kenya
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Background: Autism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion.
Objectives: To explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers.
Method: A qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts.
Results: One theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation.
Conclusion: Occupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers.
African Journal of Disability, Vol 8, 2019
Mobility Analysis of AmpuTees (MAAT 4): classification tree analysis for probability of lower limb prosthesis user functional potential
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Purpose:
To develop a predictive model to inform the probability of lower limb prosthesis users’ functional potential for ambulation.
Materials and Methods:
A retrospective analysis of a database of outcomes for 2770 lower limb prosthesis users was used to inform a classification and regression tree analysis. Gender, age, height, weight, body mass index adjusted for amputation, amputation level, cause of amputation, comorbid health status and functional mobility score [Prosthetic Limb Users Survey of Mobility (PLUS-M™)] were entered as potential predictive variables. Patient K-Level was used to assign dependent variable status as unlimited community ambulator (i.e., K3 or K4) or limited community/household ambulator (i.e., K1 or K2). The classification tree was initially trained from 20% of the sample and subsequently tested with the remaining sample.
Results:
A classification tree was successfully developed, able to accurately classify 87.4% of individuals within the model’s training group (standard error 1.4%), and 81.6% within the model’s testing group (standard error 0.82%). Age, PLUS-M™ T-score, cause of amputation and body weight were retained within the tree logic.
Conclusions:
The resultant classification tree has the ability to provide members of the clinical care team with predictive probabilities of a patient’s functional potential to help assist care decisions.
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