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Innovative data use: can we learn more from what is already available?

DANEMAYER, Jamie
September 2023

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A short talk given at the Disability Innovation Summit: Inclusive Interactions conference organised by GDI hub on 13 Sep 2023.

The use of published datasets on the prevalence of disability is reviewed. The numbers of datasets and their harmonisation is described and the advantages, limitations and opportunities for use are outlined. 

Seeking information about assistive technology: Exploring current practices, challenges, and the need for smarter systems

DANEMAYER, Jamie
HOLLOWAY, Cathy
CHO, Youngjun
BERTHOUZE, Nadia
SINGH, Aneesha
BHOT, William
DIXON, Ollie
GROBELNIK, Marko
SHAWE-TAYLOR, John
September 2023

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Assistive technology (AT) information networks are insular among stakeholder groups, causing unequal access to information. Participants often cited fragmented international marketplaces as a barrier and valued info-sharing across industries. Current searches produce biased results in marketplaces influenced by commercial interests and high-income contexts. Smart features could facilitate searching, update centralised data sources, and disseminate information more inclusively.

 

International Journal of Human - Computer Studies, Volume 177, September 2023, 103078

https://doi.org/10.1016/j.ijhcs.2023.103078

What fails: and what's not needed, Disability Dongles

HOLLOWAY, Catherine
LANDRE, Anna
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

 

A discussion concerning disability dongles (expensive technical solutions to disability problems without sufficient design input from disabled people - examples include a stair climbing wheelchair and an exoskeleton). Setting up networks of disabled people to input requirements, contextualisation of issues (for example the lack of repair facilities for wheelchairs especially in the global south), telemedicine, and the difficulties in appropriate funding for appropriate projects are discussed.

  

Accessibility and inclusion for deafblind people living in the Global South

KAMENOPOULOU, Leda
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.
 

A short presentation concerning the challenges surrounding inclusion of and accessibility for deafblind children and adults, particularly in the Global South.

Deafblindness is a spectrum and so a spectrum of approaches and of assistive aids is required. The most common cause of deaf blindness is aging. Most research has been carried out in the Global North. Very little has been carried out in the Global South or into the intersectionality with poverty, race and gender. 

The global birth prevalence of clubfoot: a systematic review and meta-analysis

SMYTHE, Tracey
ROTENBURG, Sarah
LAVY, Chris
August 2023

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Estimates of the birth prevalence of clubfoot in low and middle income settings range from 0.5 to 2 per 1000 births. However, there is currently no estimate of global birth prevalence of clubfoot.

A systematic review of studies was carried out reporting the birth prevalence of clubfoot across all countries and regions worldwide in the last 10 years. Africa Wide Information, EMBASE, CINAHL, Global Health, LILACS and Medline databases were searched for relevant studies from January 1st 2012 to February 9th 2023. Pooled prevalence estimates were calculated using the inverse variance method, and a random effects model was applied to account for heterogeneity between studies.

 

eClinicalMedicine,  Vol 63 September, 2023

DOI:https://doi.org/10.1016/j.eclinm.2023.102178

Assistive technology in Korea: Findings from the 2017 National Disability Survey

DANEMAYER, Jamie
LIN, Myung-Joon
July 2023

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Explicitly monitoring the need, use and satisfaction of assistive product (AP) provision is essential to support population health and healthy longevity in ageing/aged countries, like Korea. We present findings from the 2017 Korea National Disability Survey (NDS) on AP access and compare them to international averages, introducing Korea’s data into the wider coherence of global AP research.

 

Disability and Rehabilitation: Assistive Technology

https://doi.org/10.1080/17483107.2023.2225565 

 

Who is disabled? On whether the functional definition of disability targets the same individuals as the subjective definition

Judith Baart
Willem Elbers
Alice Schippers
May 2023

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With the increased attention to disability as a vulnerability criterion in the Sustainable Development Goals, international organizations and NGOs within the international development sector have started to pay explicit attention to persons with disabilities, including the collection of data on persons with disabilities. The Washington Group Short Set of Questions, which focuses on functional limitations, has been gaining popularity as an assessment tool for disability. This set of questions reflects a categorization of disability that does not necessarily correspond with subjective disability assessments, such as the yes/no question (“do you have a disability?”) which many development actors have used in their assessment tools when they collect disability data This study compares the subjective and the functional limitations assessment tools for disability to answer the question: do they identify the same individuals as persons with disabilities? Based on a survey carried out amongst persons with disabilities in Cambodia, we included both the Washington Group Short Set and a subjective question asking respondents to self-identify their disability type. We find that, although all respondents self-identified as disabled, not all respondents would be considered disabled according to the Washington Group Short Set of questions. In addition, there is little overlap between specific disability types according to a subjective classification method and the domains of functioning measured through the Washington Group methodology. Our findings affirm that categorization as abled or disabled depends on the tool used. This is important, as the assessment approach chosen by those collecting disability data can shape the design choices of policies and programs, and determine who benefits.

A situation assessment of assistive technology in Georgia

WHO Regional Office for Europe
May 2023

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This publication summarizes the situation of the assistive technology system in Georgia as of August 2021, and the findings of a household survey on assistive technology conducted in March 2021. It describes the current resources, needs, gaps and opportunities in the area of assistive technology in Georgia, and provides recommendations on how to strengthen the system. The situational analysis was conducted under the leadership of the Ministry of Internally Displaced Persons from the Occupied Territories, Labor, Health and Social Affairs, with technical support from WHO Regional Office for Europe and WHO Country Office in Georgia. The data was collected through interviews with assistive technology users, providers, professionals and policy makers. The report is divided into 5 chapters addressing different aspects of the assistive technology system: policy, products, provision, personnel and the findings of the household survey on the population needs.

Assistive technology access in longitudinal datasets: a global review

DANEMAYER, Jamie
MITRA, Sophie
HOLLOWAY, Cathy
HUSSEIN, Shereen
March 2023

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Functional limitations become more prevalent as populations age, emphasising an increasingly urgent need for assistive technology (AT). Critical to meeting this need trajectory is understanding AT access in older ages. Yet few publications examine this from a longitudinal perspective.

This review aims to identify and collate what data exist globally, seeking all population-based cohorts and repeated cross-sectional surveys through the Maelstrom Research Catalogue (searched May 10, 2022) and the Disability Data Report (published 2022), respectively. Datasets incorporating functional limitations modules and question(s) dedicated to AT, with a wave of data collection since 2009, were included.

 

International Journal of Population Data Science; 2023

Vol. 8 No. 1 (2023): IJPDS Standard Issue
 https://doi.org/10.23889/ijpds.v8i1.1901

Experiences of lower limb prosthesis users in Kenya: a qualitative study to understand motivation to use and satisfaction with prosthetic outcomes

MATTICK, Kate
OLDFREY, Ben
DONOVAN-HALL, Maggie
MAGOMERE, Grace
GAKUNGA, Joseph
HOLLOWAY, Catherine
December 2022

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An estimated 1.5 million people undergo limb amputation each year [1]. Low- and middle-income countries (LMICs) are projected to have a rapid increase in people living with an amputation in the coming years due to prevalence of non-communicable disease, trauma and conflict. This paper explores the personal and system factors that motivate and enhance outcomes for patients accessing a prosthetic service and using a lower-limb prosthesis within a low resource setting.

This study employed a qualitative approach to explore the motivations and satisfaction of individuals with lower limb loss engaging with a prosthetic service in Mombasa, Kenya. In-depth interviews were conducted over Microsoft Teams with 10 lower limb prosthesis users and thematic analysis was applied.

 

Disability and Rehabilitation Volume 45, 2023 - Issue 26

https://doi.org/10.1080/09638288.2022.2152875

Assistive Technology in two humanitarian contexts: Bangladesh and Jordan

KETT, Maria
June 2022

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Despite increased focus on the need for assistive technology (AT), along with estimates of need and gaps in provision in humanitarian contexts, very little is actually known about how people who need AT are managing in these contexts. To address this need, this study explored four main questions: 

What do we currently know about the need for AT in humanitarian contexts?
How is this need currently met?
What gaps are there in the evidence about these needs?
What mechanisms are needed to ensure provision of AT in humanitarian contexts? 

It explored these questions through individual interviews with AT users and their families, as well as people working in the sector, in two humanitarian response contexts: Bangladesh and Jordan. In Bangladesh, we partnered with CBM Global and their local partner, the Centre for Disability in Development, and in Jordan, all those interviewed were beneficiaries of HelpAge International.

The questions focused on the areas identified as gaps in the initial literature review, and used qualitative methodologies to probe and gain further insight into gaps across the entire AT ecosystem.

"We bear it and accept our fate” Perceptions of healthcare access from people with disabilities in Cox’s Bazar

PANELLA, Amanda
June 2022

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In November and December 2021, Ground Truth Solutions (GTS) and the International Organisation for Migration’s (IOM) Needs and Population Monitoring unit (NPM) conducted qualitative interviews with persons with mobility and vision impairments from Rohingya refugee and host community populations with the aim of better informing and supporting agencies in developing disability-inclusive programmes and engagement activities. These interviews focused on access to health services, aiming to gain insight into how people with disabilities experience engaging with healthcare services – as well as perceived barriers to access. It also looked at health information needs so that the humanitarian community will be better equipped to identify gaps in programming, deliver more equitable services, and build trust with this marginalised group. To weave tangible experiences into the narrative and bring findings to life, this research took a ‘user journey’ approach to create a set of ‘personas’ derived from key informant interviews with Rohingya and Host Community people with disabilities in Cox’s Bazar, resulting in this highly illustrative report.

Are persons with disabilities included in the effort to leave no-one behind? Mapping disability data in development in Asia and the Pacific

CBM GLOBAL’S INCLUSION ADVISORY GROUP
February 2022

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In the Asia Pacific region, UNFPA and partners work together to implement the Incheon Strategy to “Make the Right Real” for Persons with Disabilities. The Incheon Strategy is the region’s first set of disability-specific development goals to track progress towards the fulfilment of rights of persons with disabilities.

In the region, it is estimated that there are over 650 million persons with disabilities. However, without accurate, timely and disaggregated data, countries are unable to develop effective policies and programmes, monitor the wellbeing of persons with disabilities and evaluate the equity and impact of development efforts. This endangers country commitments to ‘leave no one behind’ and undermines their obligations to the Convention on the Rights of Persons with Disabilities.

This groundbreaking report demonstrates the importance of ensuring data is inclusive and provides recommendations for immediate action in order to improve the collection, analysis and reporting of disability data

Assistive Technology in urban low-income communities in Sierra Leone & Indonesia: Rapid Assistive Technology Assessment (rATA) survey results

CAREW, Mark
WALKER, Julian
OSSUL-VERMEHREN, Ignacia
BARTLETT DEVELOPMENT PLANNING
January 2022

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It is estimated by the World Health Organisation (WHO) that 15% of the world's population has a disability and one billion people need one or more Assistive Products (AP) but as little as one in ten have access to the device they need. There is however very little data to define this need for AP in low-resource settings. 

To contribute to the knowledge gap, the findings from the surveys presented in this report give a unique insight into disability prevalence and access to AT in five urban low-income communities in Sierra Leone and Indonesia, where a total of 4,256 individuals were surveyed using the rATA tool.

The rATA tool is designed for the rapid evaluation of the need, use, supply and impact of AT, Rapid Assistive Technology Assessment (rATA) is a new survey from WHO. A version modified by the Development Planning Unit-University College London (DPUUCL) was conducted in September 2019 for the research project “AT2030 community led solutions”, as part of the AT2030 programme led by Global Disability Innovation Hub.

Estimating need and coverage for five priority assistive products: a systematic review of global population-based research

DANEMAYER, Jamie
BOGGS, Dorothy
DELGADO RAMOS, Vinicius
SMITH, Emma M
KULAR, Ariana
BHOT, William
RAMOS-BARAJAS, Felipe
POLACK, Sarah
HOLLOWAY, Catherine
January 2022

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Assistive technology (AT) includes assistive products (APs) and related services that can improve health and well-being, enable increased independence and foster participation for people with functional difficulties, including older adults and people with impairments or chronic health conditions. This paper uses the umbrella term ‘functional difficulty’ (FD) to refer to all of these groups. This systematic review was undertaken to identify studies presenting population-based estimates of need and coverage for five APs (hearing aids, limb prostheses, wheelchairs, glasses and personal digital assistants) grouped by four functional domains (hearing, mobility, vision and cognition).

 

BMJ Glob Health. 2022; 7(1): e007662

doi: 10.1136/bmjgh-2021-007662

Measuring assistive technology supply and demand: A scoping review

DANEMAYER, Jamie
BOGGS, Dorothy
SMITH, Emma
DELGADO RAMOS, Vinicius
BATISTELLA, Linamara R
HOLLOWAY, Catherine
POLACK, Sarah
December 2021

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The supply of and market demand for assistive products (APs) are complex and influenced by diverse stakeholders. The methods used to collect AP population-level market data are similarly varied. In this paper, we review current population-level AP supply and demand estimation methods for five priority APs and provide recommendations for improving national and global AP market evaluation.

Abstracts resulting from a systematic search were double-screened. Extracted data include WHO world region, publication year, age-groups, AP domain(s), study method, and individual assessment approach.

 

Assistive Technology 
The Official Journal of RESNA
Volume 33, 2021 - Issue sup1: Companion Papers to the Global Report on Assistive Technology

https://doi.org/10.1080/10400435.2021.1957039

A review of innovation strategies and processes to improve access to AT: Looking ahead to open innovation ecosystems

HOLLOWAY, Catherine
MORGADO RAMIREZ, Dafne Zuleima
BHATNAGAR, Tigmansu
OLDFREY, Ben
et al
December 2021

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It is essential to understand the strategies and processes which are deployed currently across the Assistive Technology (AT) space toward measuring innovation. The main aim of this paper is to identify functional innovation strategies and processes which are being or can be deployed in the AT space to increase access to AT globally.

 


Assistive Technology 
The Official Journal of RESNA
Volume 33, 2021 - Issue sup1: Companion Papers to the Global Report on Assistive Technology
 

https://doi.org/10.1080/10400435.2021.1970653

Uganda's disability data landscape and the economic inclusion of persons with disabilities

Development Initiatives
November 2021

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This report looks at the landscape of data on disability in Uganda – summarising what data on persons with disabilities is available, who produces and uses it, and how – as well as what this means for the economic inclusion of persons with disabilities.

 

For persons with disabilities to benefit from and contribute to society and the economy there needs to be effective policies, programmes and services that support their inclusion, particularly in employment. Reliable information and data on persons with disabilities, known as ‘disability data’, is essential to planning and for decision-making. When it is of high quality, accessible and used effectively, disability data can help organisations of persons with disabilities (OPDs), civil society, government and businesses better understand and prioritise interventions that are vital for supporting persons with disabilities and ensuring their inclusion.

 

OPDs, civil society and the government have an important role to play in strengthening the landscape of disability data. Developed as part of Development Initiatives’ work on data to support disability inclusion, in consultation with Uganda’s disability rights movement, this report presents an analysis of Uganda’s landscape of disability data. It highlights important data sources, challenges and recommendations, providing a valuable evidence base to inform efforts aimed at strengthening the enabling environment for disability inclusion.

Lives turned upside down in COVID-19 times: exploring disabled people's experiences in 5 low-and-middle income countries using narrative interviews

WICKENDEN, Mary
SHAW, Jackie
THOMPSON, Stephen
ROHWERDER, Brigitte
2021

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This article explores COVID-19 related experiences of disabled people in Bangladesh, Kenya, Nigeria, Nepal and Uganda. Narrative interviews generated storied responses, focussing on respondents' priorities, which enabled us to hear what was most significant for them and their families. 143 interviews were conducted online or by phone by 7 local researchers (3 disabled), with appropriate inclusive support. Nearly everyone was interviewed twice to capture the progression of impacts over time. The data was analysed thematically through a virtual participatory approach. An overarching 'subjective' theme of feelings experienced by the participants was labelled 'destabilisation, disorientation and uncertainty'. We also identified 'concrete' or material impacts. People experienced various dilemmas such as choosing between securing food and keeping safe, and tensions between receiving support and feeling increased vulnerability or dependence, with interplay between the emotions of fear, loss and hope. We found both the concept of liminality and grief models productive in understanding the progression of participants' experiences. Disabled people reported the same feelings, difficulties and impacts as others, reported in other literature, but often their pre-existing disadvantages have been exacerbated by the pandemic, including poverty, gender and impairment related stresses and discrimination, inaccessible services or relief, and exclusion from government initiatives.

A Global Assessment of Eye Health and Quality of Life: A Systematic Review of Systematic Reviews

ASSI, Lama
CHAMSEDDINE, Fatimah
IBRAHIM, Perla
et al
September 2021

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More than 1 billion people worldwide have vision impairment or blindness from potentially preventable or correctable causes. Quality of life, an important measure of physical, emotional, and social well-being, appears to be negatively associated with vision impairment, and increasingly, ophthalmic interventions are being assessed for their association with quality of life.

Objective  - To examine the association between vision impairment or eye disease and quality of life, and the outcome of ophthalmic interventions on quality of life globally and across the life span, through an umbrella review or systematic review of systematic reviews.

The electronic databases MEDLINE, Ovid, Embase, Cochrane Database of Systematic Reviews, Proquest Dissertations, and Theses Global were searched from inception through June 29, 2020, using a comprehensive search strategy. Systematic reviews addressing vision impairment, eye disease, or ophthalmic interventions and quantitatively or qualitatively assessing health-related, vision-related, or disease-specific quality of life were included. Article screening, quality appraisal, and data extraction were performed by 4 reviewers working independently and in duplicate. The Joanna Briggs Institute critical appraisal and data extraction forms for umbrella reviews were used.

 

JAMA Ophthalmol. 2021;139(5):526-541

doi:10.1001/jamaophthalmol.2021.0146

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