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German version of the Chelsea Critical Care Physical Assessment Tool (CPAx-GE): translation, cross-cultural adaptation, validity, and reliability

EGGMANN, Sabrina
VERRA, Martin L
STEFANICKI, Valentine
KINDLER, Angela
SEYLER, Daphne
HILFIKER, Roger
SCHEFOLD, Joerg C
BASTIAENEN, Caroline H G
ZANTE, Bjoern
2021

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Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.


Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.

 

Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.

 

Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.

COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region

MEHROTRA, Nilika
SOLDATIC, Karen
2021

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An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.

Learning Needs Assessment Report: Skills for impact - Rohingya Humanitarian crisis response, Bangladesh Local Humanitarian Aid Workers

AHSANUL ISLAM, Suman
et al
June 2020

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The Rohingya humanitarian crisis response in Cox’s Bazar (CXB) is a fairly new and complex experience for the humanitarian aid workers in Bangladesh. Aid workers are responsible for responding effectively in a very demanding context and acquire certain skills and competencies to adapt to the extreme workload. Since the current response in CXB began in 2017, local humanitarian aid workers (LHAWs) have gathered tremendous amount of learnings and experiences.

 

The objective of this LNA is to outline the knowledge, skills, capacity gaps and learning needs of LHAWs working in CXB. 

 

This LNA focuses on understanding LHAWs’ skills, knowledge and behaviour - both operational & technical. It analyses individuals' ability to contribute and implement response plans and respond effectively to the humanitarian crisis. Analysis focuses on understanding LHAWs’ capacity in addressing the needs of specific beneficiary groups such as children, women & girls, people with disability (PwD), elderly and people with chronic health issues. Quantitative and qualitative data was collected in November 2019.

 

These rights are mine: disability rights among refugees and the host community in Tanzania

MURIITHI, Kevin
MANGE, Sansom
DICKSON, Edson
February 2020

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The International Rescue Committee has been working in Tanzania with persons with disabilities in Nyarugusu refugee camp and the surrounding host community in Kasulu district since 2015. The IRC’s These Rights are Mine (TRM) project – a 30-month project funded by the European Commissions Instrument for Democracy and Human Rights (EIDHR) – uses a rights-based approach to ensure that persons with disabilities are able to claim their rights and that government authorities and civil society organizations acting on their behalf are able to deliver on these rights. This survey aims to establish baseline information about disability rights in the IRC’s area of operations, assessing the needs of persons with disabilities as well as barriers faced by them in everyday life

Understanding the mobile disability gap Insights on mobile phone access and usage by persons with disabilities in Kenya and Bangladesh

ARANDA-JAN, Clara
BOUTARD, Alizee
December 2019

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This research aims to bridge the knowledge gap and to understand the potential of mobile phones as assistive technologies (ATs) for persons with disabilities in Kenya and Bangladesh. This report presents, for the first time, an evaluation of the gap and barriers to mobile phone ownership experienced by persons with disabilities, as well as the usage patterns of four main mobile-enabled services (voice, SMS, mobile internet and mobile money) and the role of mobile phones to enable access to basic services, such as education, healthcare, transportation, employment and financial services. Finally, the report explores the characteristics of access and usability of mobile products and services along the customer journey.

Content and Quality of Motor Initiatives in the Support of People With Profound Intellectual and Multiple Disabilities

VAN ALPHEN, Helena J M
WANINGE, Aly
MINNAERT, Alexander E M G
VAN DER PUTTEN, Annette A J
2019

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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.

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

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

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

Situation of persons with disabilities in Lebanon.

COMBAZ, Emilie
July 2018

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This K4D helpdesk report identifies information since 2013 concerning:

  • data on the state of persons with disabilities in Lebanon
  • assessments of laws on the rights of persons with disabilities in Lebanon
  • analyses of the political, social, cultural, and economic context for persons with disabilities in Lebanon

Issues particular to persons with disabilities amongst Syrian refugees within these aspects are identified where possible.

The state of knowledge and gaps are discussed. 

Invisible victims of sexual violence. Access to justice for women and girls with disabilities in India

HUMAN RIGHTS WATCH
April 2018

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This report is based on 17 cases of sexual violence against women and girls with disabilities in eight Indian states. It comes five years after The Criminal Law (Amendment) Act, 2013 (the 2013 amendments) were adopted in India. It follows Human Rights Watch’s November 2017 report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India, which found that rape survivors still face significant barriers obtaining justice and critical support services because legal and other reforms have not been fully realised.

This report finds that while the 2013 amendments have made significant progress in responding to the widespread challenges that victims of sexual violence endure, they have yet to properly develop and implement support for survivors with disabilities in the form of trainings and reforms throughout the criminal justice system. It highlights gaps in enforcement and calls for concrete measures to address the needs of women and girls with disabilities seeking justice for abuse. 

World Health Organization global disability action plan: The Mongolian perspective

KHAN, Fary
et al
April 2018

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The aim of this literature review and research was to provide an update on disability and rehabilitation in Mongolia, and to identify potential barriers and facilitators for implementation of the World Health Organization (WHO) Global Disability Action Plan (GDAP). A 4-member rehabilitation team from the Royal Melbourne Hospital conducted an intensive 6-day workshop at the Mongolian National University of Medical Sciences, for local healthcare professionals (n=77) from medical rehabilitation facilities (urban/rural, public/private) and non-governmental organizations. A modified Delphi method (interactive sessions, consensus agreement) identified challenges for rehabilitation service provision and disability education and attitudes, using GDAP objectives

 

Journal of Rehabilitation Medicine, Volume 50, Number 4, April 2018, pp. 358-366(9)

https://doi.org/10.2340/16501977-2207
 

INCLUDE US! Good practices in the inclusion of persons with disabilities in Myanmar

HUMANITY & INCLUSION (HI)
2018

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In 2015, Humanity & Inclusion HI began the project: “Empowering persons with disabilities to contribute to equal access to basic social services and local policymaking processes in under-resourced areas of Ayeyarwady and Mandalay”. The project supported Disabled Peoples Organizations and other civil society groups to participate in the development of inclusive regional policies and programmes, and to promote good practices contributing to greater access to services for persons with disabilities. An aim was also to document, publish and disseminate these good practices throughout Myanmar, increasing awareness and understanding in order to sensitise people to disability inclusion and influence policy change. Rather than focusing on what is not working, this report seeks to shift attention to what has worked locally and how it could be replicated in other parts of the country, providing constructive, practical recommendations to decision-makers, service providers and other community groups in Myanmar. The report is related to two projects. The second is “Advocacy for Change: Fostering protection and rights of men and women with disabilities in Myanmar”. 

 

There are global recommendations. There are seven good practices:

  • Related to education:  Case Study I: Promoting Inclusion of children with disabilities in Middle Schools of Ayartaw. Case Study II: How the development of the teacher training promotes inclusion of all children in education
  • Related to economic life: Case Study III: How partnerships between private companies and organizations of people with disabilities can improve access to employment and vocational training
  • Related to social/community life: Case Study IV: Giving the Myanmar Deaf Community access to information.  Case Study V: How parental advocacy can make a difference
  • Related to political life: Case Study VI: Community advocacy in obtaining the National Registration Card. Case Study VII: Supporting people with disabilities to participate in Myanmar elections

 

Pacific regional consultation – IASC guidelines on inclusion of persons with disabilities in humanitarian action

DOMINIK, Georgia
January 2018

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The Pacific Disability Forum (PDF), in partnership with the Inter-Agency Standing Committee (IASC) Task Team on Inclusion of Persons with Disabilities in Humanitarian Action and the International Disability Alliance (co-chair of the Task Team), held a regional multi-stakeholder consultation for the Pacific in Nadi, Fiji from 24 – 25 January 2018.

The workshop was the first in a series of regional consultations which will support the development of the IASC Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action (“the Guidelines”). 

The Guidelines will assist humanitarian actors, governments, affected communities and organizations of persons with disabilities to coordinate, plan, implement, monitor and evaluate essential actions that foster the effectiveness, appropriateness and efficiency of humanitarian action, resulting in the full and effective participation and inclusion of persons with disabilities and changing practice across all sectors and in all phases of humanitarian action. 

Childhood disability in Malaysia: a study of knowledge, attitudes and practices

MOORE, Katie
BEDFORD, Juliet
November 2017

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This study was carried out to assess the knowledge, attitudes and practices of society towards children with disabilities, the children themselves, and their peers in Malaysia. The study took place in Selangor, Kelantan, Sabah and Sarawak. There were 756 total respondents/participants including government ministries, community members, service providers, care givers and children and adolescents both with and without disabilities. 

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)

Community Action Research in Disability (CARD): An inclusive research programme in Uganda

HARTLEY, Sally D
YOUSAFZAI, AK
KAAHWA, MG
FINKENFLÜGEL, H
WADE, A
BAZIRAKE, G
DRACHLER, ML
SEELEY, J
ALAVI, Y
MATAZE, W
MUCURNGUZI, E
2017

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The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

 

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

 

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

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