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‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

Implementing music therapy through telehealth: considerations for military populations

VAUDREUIL, Rebecca
LANGSTON, Diane G
MAGEE, Wendy L
BETTS, Donna
KASS, Sara
LEVY, Charles
2020

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Purpose

Telehealth provides psychotherapeutic interventions and psychoeducation for remote populations with limited access to in-person behavioural health and/or rehabilitation treatment. The United States Department of Défense and the Veterans Health Administration use telehealth to deliver primary care, medication management, and services including physical, occupational, and speech-language therapies for service members, veterans, and eligible dependents. While creative arts therapies are included in telehealth programming, the existing evidence base focuses on art therapy and dance/movement therapy, with a paucity of information on music therapy.

 

Methods

Discussion of didactic and applied music experiences, clinical, ethical, and technological considerations, and research pertaining to music therapy telehealth addresses this gap through presentation of three case examples. These programmes highlight music therapy telehealth with military-connected populations on a continuum of clinical and community engagement: 1) collaboration between Berklee College of Music in Boston, MA and the Acoke Rural Development Initiative in Lira, Uganda; 2) the Semper Sound Cyber Health programme in San Diego, CA; and 3) the integration of music therapy telehealth into Creative Forces®, an initiative of the National Endowment for the Arts.

 

Results

These examples illustrate that participants were found to positively respond to music therapy and community music engagement through telehealth, and reported decrease in pain, anxiety, and depression; they endorsed that telehealth was not a deterrent to continued music engagement, requested continued music therapy telehealth sessions, and recommended it to their peers.

 

Conclusions

Knowledge gaps and evolving models of creative arts therapies telehealth for military-connected populations are elucidated, with emphasis on clinical and ethical considerations.

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

Experiences accessing and using rehabilitation services for people with physical disabilities in Sierra Leone

AENISHANSLIN, Justine
AMARA, Abu
MAGNUSSON, Lina
April 2020

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In order to explore the experiences of persons with physical disabilities accessing and using rehabilitation services in Sierra Leone, interviews with 38 individuals with differing physical disabilities were carried out in three locations across Sierra Leone (Freetown, Bo and Makeni).

The analysis resulted in six themes:  The initial and ongoing need for rehabilitation throughout life; Challenges with the cost of rehabilitation and transportation to reach rehabilitation services; Varied experiences with rehabilitation staff; Coming to terms with disability and facing stigma; The struggles without and opportunities with rehabilitation services; Limited knowledge and availability of rehabilitation services.

Addressing barriers to affordability, access, and availability of rehabilitation and addressing knowledge gaps, attitudinal barriers and stigma towards rehabilitation and persons with disability are discussed.

 

Disability and Rehabilitation, April 2020

DOI: 10.1080/09638288.2020.1755375

Guidelines on best practice for persons living with deafblindness

ZWANENBURG, Aline
TESNI, Sian
June 2019

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These guidelines were developed to advance understanding of the needs and challenges of persons living with deafblindness and to promote their inclusion in society. The target audience are members of the CBM Federation with particular interest to, among others staff at Regional and Country Offices, Member Associations, co-workers, partners (including governments, education agencies, public and private service providers, and professionals), as well as persons living with deafblindness and their families.

 

Part One gives an overview of the impact deafblindness can have on an individual’s development and learning. It emphasises the need for a continuum of services and programmes, including early detection, referral, educational input, and family support.

 

Part Two outlines components of education and rehabilitation programmes. It provides guidelines on communication, holistic assessment procedures, assistive devices, advocacy and self-determination, transition planning, and discusses the importance of on-going regular access to health and therapeutic services.

 

Part Three considers how to improve and expand existing services through the provision of on-going personnel capacity building, and through networking with key stakeholders, to consider intersecting issues and service expansion. Each section includes an overview of the topic explored, some case studies and considerations for service implementation.

Design of the user interface for “Stappy”, a sensor-feedback system to facilitate walking in people after stroke: a user-centred approach

JIE, Li-Juan
JAMIN, Gaston
SMIT, Kate
BEURSKENS, Anna
BRAUN, Susy
2019

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Introduction: 

Sensor-feedback systems can be used to support people after stroke during independent practice of gait. The main aim of the study was to describe the user-centred approach to (re)design the user interface of the sensor feedback system “Stappy” for people after stroke, and share the deliverables and key observations from this process.

 

Methods: 

The user-centred approach was structured around four phases (the discovery, definition, development and delivery phase) which were fundamental to the design process. Fifteen participants with cognitive and/or physical limitations participated (10 women, 2/3 older than 65). Prototypes were evaluated in multiple test rounds, consisting of 2–7 individual test sessions.

 

Results: 

Seven deliverables were created: a list of design requirements, a personae, a user flow, a low-, medium- and high-fidelity prototype and the character “Stappy”. The first six deliverables were necessary tools to design the user interface, whereas the character was a solution resulting from this design process. Key observations related to “readability and contrast of visual information”, “understanding and remembering information”, “physical limitations” were confirmed by and “empathy” was additionally derived from the design process.

 

Conclusions: 

The study offers a structured methodology resulting in deliverables and key observations, which can be used to (re)design meaningful user interfaces for people after stroke. Additionally, the study provides a technique that may promote “empathy” through the creation of the character Stappy. The description may provide guidance for health care professionals, researchers or designers in future user interface design projects in which existing products are redesigned for people after stroke.

Sightsavers' approach to making health services inclusive for everyone

Sightsavers
April 2019

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Sightsavers has produced a new film that sets out our work to make health care services accessible and inclusive for everyone. It focuses on our programmes in Bhopal, India and Nampula, Mozambique. This highlights how we work and share learnings globally, but also shows how programmes can be made locally relevant by working with partners with direct experience.

The film showcases some of the people who work hard to make our inclusive health programmes a success, from Sightsavers experts and government health workers to leaders of disabled people’s organisations.

To find out more our inclusive health work and how we are developing best practice in terms of inclusive health programmes, visit our website: https://www.sightsavers.org/disability/health/

Towards independent living: Collecting examples from Europe

ANGELOVA-MLADENOVA, Lilia
March 2019

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This Collection is a joint initiative of the European Network on Independent Living (ENIL) and the European Disability Forum (EDF). It features examples from different EU Member States, which to a different extent facilitate the right to live independently in the community.

The examples are divided into four areas, presented in different chapters:

  • Legislation and funding: State Funded Peer-Counselling – Estonia; Direct Payments – Ireland.
  • Community-based support: Peer-Counselling for women with disabilities – Austria; Supported living for adults with intellectual disabilities – Croatia; Supported Decision-Making – The Czech Republic; Mobile Mental Health Units – Greece; Personal Assistance for People with Complex Disabilities – Sweden .
  • Involvement of disabled people: Co-Production in Social Care – United Kingdom; Participation of Organisations of People with Disabilities – Italy
  • Self-advocacy: Self-Advocacy of Disabled People – Romania

 

Assistive technology in Tajikistan: Situational analysis

WORLD HEALTH ORGANISATION (WHO). REGIONAL OFFICE FOR EUROPE
2019

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"This publication summarizes the current gaps, needs and opportunities for intervention in the field of assistive technology in Tajikistan. The situational analysis was conducted under the leadership of the Ministry of Health and Social Protection, Republic of Tajikistan and with technical support from the WHO Country Office, Tajikistan. It was undertaken in collaboration with different Government ministries and State agencies, development partners, United Nations agencies, nongovernmental organizations, disabled people’s organizations and users of assistive products. It adopted a realist synthesis approach, responsive to the unique social, cultural, economic and political circumstances in the country. The evaluation focuses on assistive technology policy and governance, service provision and the impact of assistive technology on the health and well-being of individual users and their families, with the aim of improving access to high-quality, affordable assistive products in Tajikistan.

 

200 persons with disabilities participated in a survey designed to collect information on self-reported need for assistive products, user experiences and barriers to access. An additional 11 focus groups made up of persons with disabilities and older adults held indepth discussions on assistive technology. The major providers of assistive technology (Government facilities, nongovernmental organizations, local producers) were also interviewed as part of the research"

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

“Even the fowl has feelings”: access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia

SCHENK, Katie D
TUN, Walter
SHEEHY, Meredith
OKAL, Jerry
KUFFOUR, Emmanuel
MOONO, Grimond
MUTALE, Felix
KYEREMAA, Rita
NGIREABAKUNZI, Edson
AMANYEIWE, Ugochukwu
LECLERC-MADLALA, Suzanne
October 2018

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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.

Learning From Experience: Guidelines for locally sourced and cost-effective strategies for hygiene at home for people with high support needs.

World Vision/CBM Australia
May 2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HYGIENE AT HOME FOR PEOPLE WITH HIGH SUPPORT NEEDS
This document is one of two developed in the Jaffna District and describes strategies that used to assist households and individuals in hygiene tasks at home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka.

NOTE: The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Assistive technologies in developing countries

ROHWERDER, Brigitte
March 2018

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This rapid review looks at examples of existing literature on the availability of assistive technologies and efforts to make these technologies more affordable and accessible in developing countries. Needs and access to assistive technologies are overviewed. The discussion of market characteristics of assistive technologies covers availability, affordability, quality, appropriate design, and awareness and demand.  Efforts to increase the affordability and accessibility of assistive technology are discussed covering: The Global Cooperation on Assistive Technology (GATE); the WHO Priority Assistive Products List; and EYElliance and eye health initiatives. Market shaping and community based approaches are discussed in this context.

 

This is a K4D helpdesk report. This report was commissioned by the UK Department for International Development (DFID)

Addressing the rising prevalence of hearing loss

WORLD HEALTH ORGANISATION (WHO)
February 2018

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Hearing loss is the fourth highest cause of disability globally, with an estimated annual cost of over 750 billion dollars. These facts are well known and have contributed to growing global consciousness on the need for accessible hearing care in all regions of the world. Looking forward however, the demand for hearing care is likely to grow significantly in coming decades. This report highlights the potential escalation of hearing loss to the middle of the century, and focusses on the factors responsible for hearing loss and the means to address them. 

WHO estimates in 2008 found that 360 million people worldwide live with disabling hearing loss, including 32 million children and 180 million older adults. The most recent estimations place this figure at over 466 million people with disabling hearing loss in 2018. The main areas of the world affected by disabling hearing loss are the South Asian, Asia Pacific and Sub-Saharan African regions, with a prevalence rate almost four times that of the high income regions.

 

Measures to address these concerns deal with: prevention of infections in mothers and babies; chronic ear infections; noise exposure; and ototoxic hearing loss.

 

Public health aspects are highlighted. 

Standard school eye health guidelines for low and middle-income countries

GILBERT, Clare
MINTO, Hasan
MORJARIA, Priya
KHAN, Imran
February 2018

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The purpose of these best practice guidelines is to provide direction to those planning and implementing eye health initiatives for schools, including policy makers, health care and educational authorities, health planners, eye care delivery organizations and professionals, in partnership with teachers, parents and children. In situations where resources for eye health are limited, decisions need to be made to ensure that programs not only address public health problems but are also implemented in a way that is effective, efficient and, wherever possible, sustainable. Systems for monitoring and plans for evaluation should also be developed at the outset. These practice guidelines provide an excellent learning resource for a module on school eye health that can be incorporated in optometry and ophthalmology residency curricula.  A section highlights some of the challenges in current school eye health initiatives and provides a framework in which school eye health is integrated into school health programs. Case studies are provided to emphasise the integrated approach and a 15-step approach, from situation analysis to monitoring and evaluation, is suggested. Practical recommendations for implementation are provided, including information on the equipment and technology required

 

This evidence-based document is based on best practice guidelines initially developed through a joint collaboration between Sightsavers International, the London School of Hygiene and Tropical Medicine and the Brien Holden Vision Institute

Learning from experience: Guidelines for locally sourced and cost-effective strategies to modify existing household toilets and water access

WORLD VISION
CBM Australia
2018

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This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HOME MODIFICATIONS FOR WASH ACCESS
This document is one of two developed in the Jaffna District and describes the strategies which were used to assist people with disabilities to access toilet and water facilities at their own home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka. Houses and toilet structures in the region were made of brick and concrete. No new toilets were built and modifications involved only minor work to existing household structures, water points and toilets.

NOTE:
The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Report of the informal consultation on stopping discrimination and promotion inclusion of persons affected by Leprosy. New Delhi, 14–16 Nov 2017

COOREMAN, Erwin
WHO SEARO/Department of Control of Neglected Tropical Diseases
et al
2018

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An Informal Consultation on Stopping Discrimination and Promoting Inclusion of Persons Affected by Leprosy was held in New Delhi from 14 to 16 November 2017. Forty delegates with diverse backgrounds, experience and expertise enriched the discussions. Persons affected by leprosy brought to the table the challenges faced in daily life and suggested actions to be taken to reduce stigma and discrimination related to leprosy. Representatives of national programmes presented actions taken in their respective countries. The participants acknowledged the fact that stigma and discrimination related to leprosy still exists at a significant level. Information about stigma and discrimination related to leprosy needs to be collected in a more systematic manner to assess the magnitude of the problem and to further plan activities to reduce it.

Key recommendations from the consultation included counselling and reporting of incidences of discrimination. Efforts should be continued to inform facts about leprosy to the community.

The participants strongly recommended that leprosy programmes should adopt a ‘rights-based approach’ in line with the Sustainable Development Goals.

Strengthening environmental sustainability and inclusion in health and other development programs. Practical guidance for environmental sustainability, accessibility, gender, safeguarding and disaster risk reduction

CBM
2018

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The purpose of this booklet is to promote discussion and innovation for strengthening environmental sustainability and inclusion in health and other development activities. The case studies and checklists are designed to foster creative thinking and the ongoing gathering of evidence related to these topics. The booklet will be useful to anyone seeking high quality outcomes from health and other development programs. The information was first compiled for CBM’s engagement in the General Assembly of the International Agency for the Prevention of Blindness 2016, however will be useful for advancing sustainable development with inclusion in any context.

The case sutdies are: Environmental Sustainability in Eye Health, Caritas Takeo Eye Hospital (CTEH), Cambodia; and  Strengthening Accessibility and Inclusion in Eye Health. UMC Kissy Eye Hospital, Freetown, Sierra Leone, West Africa

Everybody Matters: Good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

Van SLOBBE, Caroline
November 2017

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This publication provides introductory chapters from two activists who work to create better opportunities for people with disabilities in Nigeria and India. Subsequently, the challenges that organisations worldwide have encountered whilst improving the access to and knowledge of sexual and reproductive health and rights for people with disabilities are presented. Ways in which they managed to find solutions and the results achieved are reviewed. Some cases show the importance of a more personal approach whilst others emphasise the advantage of changing systems and policies. Different regions, types of disabilities and various SRHR-topics are reflected in these stories. All cases provide lessons learnt that contribute to a set of recommendations for improved responses. The closing chapter highlights the challenges, solutions, and ambitions that are presented and lead up to a concise overview of recommendations.  

Good practice examples include:

A shift in SRH programming (Nepal)

Breaking Barriers with performance art (Kenya)

Her Body, Her Rights (Ethiopia)

People with disabilities leading the way (Israel Family Planning Association)

Best Wishes for safe motherhood (Nepal)

It’s my body! (Bangladesh)

Calling a spade a spade (Netherlands)

Four joining forces (Colombia)

Change agents with a disability (Zimbabwe)

Tito’s privacy and rights (Argentina)

Sign language for service providers (Kenya)

Employment outcomes of skills training in South Asian countries: An evidence summary

ILAVARASAN, P Vigneswara
KUMAR, Arpan K
ASWANI, Reema
November 2017

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This evidence summary of systematic reviews provides insights for policy makers surrounding the impact of training programmes on employment outcomes. There are 11 studies included in this summary focusing on technical and vocational education and training (TVET), rehabilitation and counselling, personality development (including leadership training, stress management and communication skills training) and entrepreneurship training programmes.

 

The target groups covered in the included studies are diverse including people with disabilities, health workers, women and enterprises as a whole. The final studies comprise of one study each from 2011 and 2017; two studies each from 2013, 2015 and 2016; and three studies from 2014. The focus of this evidence is on low and middle income South Asian countries namely: Afghanistan, Bangladesh, Bhutan, India, Nepal, Pakistan, and Sri Lanka

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