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How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge

JOHNSON, Ensa
NILSSON, Stefan
ADOLFSSON, Margareta
November 2019

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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

LOUWERSE, Ilse
HUYSMANS, Maaike A
VAN RIJSSEN, Jolanda H J
OVERVLIET, Joyce
VAN DER BEEK, Allard J
ANEMA, Johannes R
November 2019

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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

STAHL, Christian
KARLSSON, Elin A
SANDQVIST, Jan
HENSING, Gunnel
BROUWER, Sandra
FRIBERG, Emilie
MACEACHEN, Ellen
October 2019

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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

DOWNER, Matthew
September 2019

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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

The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

South African stakeholders’ knowledge of community-based rehabilitation

RULE, Sarah
ROBERTS, Anton
McLAREN, Pamela
PHILPOTT, Susan
September 2019

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Background: Community-based rehabilitation (CBR) is a complex concept and strategy that has been implemented in diverse ways globally and in South Africa. Internationally, some stakeholders have described CBR as confusing, and this may influence implementation. A southern African study reports that there is insufficient evidence of the understanding of CBR in the region to influence training, policy and practice.

 

Objectives: The aim of this study was to investigate South African stakeholders’ knowledge of CBR.

 

Method: This article reports on an electronic survey that was part of a larger mixed methods study. Based on the sample of 86 respondents, descriptive statistics were used to analyse the quantitative data and thematic analysis for the qualitative data.

 

Results: The majority of respondents had had exposure to CBR, but almost a quarter had no knowledge of the CBR guidelines and matrix. The results revealed varying knowledge concerning the key concepts of CBR, its beneficiaries and its funders. Respondents identified persons with disabilities as having a central role in the implementation of CBR. Problems with the visibility of CBR programmes were noted, as well as misunderstandings by many therapists.

 

Conclusion: The implementation of CBR, and its goal of ensuring the rights of persons with disabilities, is negatively affected by the confusion attached to the understanding of what CBR is. The misunderstandings about, and lack of visibility of, CBR in South Africa may hinder its growing implementation in the country in line with new government policies.

 

 

African Journal of Disability, Vol 8, 2019

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

National Conference on Assistive Technology for All 2030, Bengaluru, India, August 2-3, 2019

GHOSH, Ritu
RAMAN, Lakshmi
Eds
August 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

IASC TASK TEAM ON INCLUSION OF PERSONS WITH DISABILITIES IN HUMANITARIAN ACTION
July 2019

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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

Disability inclusion helpdesk; evidence digest issue 1, June 2019

SDDirect
June 2019

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The Evidence Digest aims to capture knowledge emerging from Helpdesk activities in a systematic manner and disseminate findings. This short summary will:

Share information on and learnings from the Disability Inclusion Helpdesk over the last quarter, highlighting headline messages and implications for programmers and policymakers;
Share relevant information and learning from other DID outputs;
Provide relevant information on recent evidence, policy changes and events in the field of disability inclusion, and;
Raise awareness on how to access the Helpdesk and demonstrate its offer.

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.

ClinFIT: ISPRM's Universal Functioning Information Tool based on the WHO's ICF

FRONTERA, Walter
et al
May 2019

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A short editorial reviews the development of ClinFit (“Clinical Functioning Information Tool”).  The expectation is that ClinFIT can be tailored to the needs of (1) rehabilitation service types along the continuum of care, (2) different patient populations across age groups and health conditions, and (3) low-, middle-, and high‑income countries

 

J Int Soc Phys Rehabil Med 2019;2:19-21

DOI: 10.4103/jisprm.jisprm_36_19

Agriculture and mobile-based interventions for smallholder farmers: best practice on disability inclusion, Disability Inclusion Helpdesk Research Report No. 14

AHLENBÄCK, Veronica
LEE, Harri
COE, Sue
May 2019

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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

TORO-HERNÁNDEZ, María Luisa
MONDRAGÓN-BARRERA, Mónica Alejandra
TORRES-NARVÁEZ, Martha Rocío
VELASCO-FORERO, Sandra Esperanza
GOLDBERG, Mary
2019

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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

NIJHOLT, Sarah
April 2019

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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

PERRY, Stephen
LANGE, Kirstin
MITRA, Gopal
WOOD, Gavin
April 2019

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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

HUMANITY & INCLUSION (HI)
April 2019

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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

Multilingualism and augmentative and alternative communication in South Africa – Exploring the views of persons with complex communication needs

TONSING, Kerstin M.
Van NIEKERK, Karin
SCHLUNZ, Georg
WILKEN, Ilana
2019

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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

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