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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. 

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 

 

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

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

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

Musculoskeletal impairment among Syrian refugees living in Sultanbeyli, Turkey: prevalence, cause, diagnosis and need for related services and assistive products

BOGGS, Dorothy
ATIJOSAN-AYODELE, Oluwarantim
YONSO, Hisem
et al
April 2021

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Epidemiological data on musculoskeletal impairment (MSI) and related service and assistive product (AP) needs for displaced populations are lacking. This study aimed to estimate the prevalence, aetiology, and specific MSI diagnosis and the need for related services and APs among Syrian refugees living in Sultanbeyli, a district in Istanbul, Turkey.

A population-based survey used probability proportionate to size and compact segment sampling to select 80 clusters (‘street’) of 50 individuals (aged 2+), for total sample size of approximately 4000 participants. An updated version of the Rapid Assessment of MSI tool (RAM) was used to screen all participants using six questions. Any participant who screened positive underwent a standardised examination by a physiotherapist to assess the presence, aetiology, severity and specific diagnosis of MSI and an assessment of need for related services and APs.

 

Conflict and Health volume 15, Article number: 29 (2021)

https://doi.org/10.1186/s13031-021-00362-9

How targeting mechanisms can identify people with disabilities for inclusion in social protection programmes

SAMMON, Elayn
CARRARO, Ludovico
COTE, Alexandre
ZEVENBERGEN, Stacey
HOLMES, Rebecca
March 2021

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Developed by Social Protection Approaches to COVID-19: Expert Advice (SPACE) in collaboration with the UNPRPD joint program on inclusive Social Protection, the UNPRPD global initiative on COVID 19 inclusive response and recovery, and Humanity & Inclusion.

The COVID-19 pandemic has demonstrated that countries which have disability identification mechanisms and registries already in place have been in a better position to provide fast relief and expand shock responsive support to persons with disabilities and their families. 

This guidance note includes:

  • Brief introduction to the definitions and terminology surrounding disability and the concept of inclusive social protection
  • Summary of the rationale for the inclusion of persons with disability in social protection programming
  • Examples for overcoming the challenges for outreach, identification, and registration, and needs assessment
  • Some country examples
  • Overall implications for future programming.

The definition of disability and disability related data collection and analyses - Applying the IASC Guidelines in the northwest Syria humanitarian response

UNHCR INCLUSION TECHNICAL WORKING GROUP, SYRIA PROTECTION CLUSTER (TURKEY)
February 2021

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Action by humanitarian partners to strengthen inclusion of persons with disabilities in the humanitarian response in an evidencebased manner remains highly needed – this note aims to support that effort by providing background and explanation on the definition of disability as well as on how to interpret and use data related to disability.

 

The note also provides elaboration on the Syria Protection Cluster (Turkey) recommended disability-related data collection methodology for humanitarian organizations and entities in northwest Syria. Thereby the note aims to stimulate and assist the broader humanitarian community in northwest Syria in adopting the Washington Group Short Set of Questions on Functioning, especially in relation to disability focused data collection and in understanding and utilizing assessment findings, specifically prevalence-rates of disability in northwest Syria.

 

For more elaborated description of the situation of persons with disability in northwest Syria and practical suggestions for humanitarians on enhancing inclusion of persons with disabilities in programming, this note is to be read in conjunction with the ITWG “Self-reported barriers to activities of daily living of persons with disabilities living in IDP sites in northwest Syria” brief report and recommendations.

 

Global estimates of the need for rehabilitation based on the Global Burden of Disease study 2019: a systematic analysis for the Global Burden of Disease Study 2019

CIEZA, Alarcos
CAUSEY, Kate
KAMENOV, Kaloyan
HANSON, Sarah Wulf
CHATTERJI, Somnath
VOS, Theo
December 2020

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Background: Rehabilitation has often been seen as a disability-specific service needed by only few of the population. Despite its individual and societal benefits, rehabilitation has not been prioritised in countries and is under-resourced. We present global, regional, and country data for the number of people who would benefit from rehabilitation at least once during the course of their disabling illness or injury.

 

Methods: To estimate the need for rehabilitation, data from the Global Burden of Diseases, Injuries, and Risk Factors Study 2019 were used to calculate the prevalence and years of life lived with disability (YLDs) of 25 diseases, impairments, or bespoke aggregations of sequelae that were selected as amenable to rehabilitation. All analyses were done at the country level and then aggregated to seven regions: World Bank high-income countries and the six WHO regions (ie, Africa, the Americas, Southeast Asia, Europe, Eastern Mediterranean, and Western Pacific).

 

Findings: Globally, in 2019, 2·41 billion (95% uncertainty interval 2·34–2·50) individuals had conditions that would benefit from rehabilitation, contributing to 310 million [235–392] YLDs. This number had increased by 63% from 1990 to 2019. Regionally, the Western Pacific had the highest need of rehabilitation services (610 million people [588–636] and 83 million YLDs [62–106]). The disease area that contributed most to prevalence was musculoskeletal disorders (1·71 billion people [1·68–1·80]), with low back pain being the most prevalent condition in 134 of the 204 countries analysed.

 

Interpretation: To our knowledge, this is the first study to produce a global estimate of the need for rehabilitation services and to show that at least one in every three people in the world needs rehabilitation at some point in the course of their illness or injury. This number counters the common view of rehabilitation as a service required by only few people. We argue that rehabilitation needs to be brought close to communities as an integral part of primary health care to reach more people in need.

 

VOLUME 396, ISSUE 10267, P2006-2017, DECEMBER 19, 2020
https://doi.org/10.1016/S0140-6736(20)32340-0

Trends in prevalence of blindness and distance and near vision impairment over 30 years: an analysis for the Global Burden of Disease Study

GBD 2019 Blindness and Vision Impairment Collaborators
December 2020

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To contribute to the WHO initiative, VISION 2020: The Right to Sight, an assessment of global vision impairment in 2020 and temporal change is needed. This paper aims to extensively update estimates of global vision loss burden, presenting estimates for 2020, temporal change over three decades between 1990–2020, and forecasts for 2050.

A systematic review and meta-analysis of population-based surveys of eye disease from January, 1980, to October, 2018 was carried out. Only studies with samples representative of the population and with clearly defined visual acuity testing protocols were included. Hierarchical models were fitted to estimate 2020 prevalence (with 95% uncertainty intervals [UIs]) of mild vision impairment (presenting visual acuity ≥6/18 and <6/12), moderate and severe vision impairment (<6/18 to 3/60), and blindness (<3/60 or less than 10° visual field around central fixation); and vision impairment from uncorrected presbyopia (presenting near vision <N6 or <N8 at 40 cm where best-corrected distance visual acuity is ≥6/12). We forecast estimates of vision loss up to 2050.

 

https://doi.org/10.1016/ S2214-109X(20)30425-3

Addressing the disability data gap in humanitarian action

COLLINSON, Sarah
October 2020

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This Humanitarian Practice Network Paper (Number 83) explores the challenge of improving the collection, analysis and use of disability data to support more inclusive, impartial and accountable humanitarian action. It considers both the obstacles in this area and the potential opportunities for improving practice going forward. The paper draws directly on the experience and outcomes of a recent UK Aid-funded multi-partner action research project led by Humanity & Inclusion which explored how the use of the internationally validated Washington Group Questions on Disability can support the collection of more reliable and comparable quantitative data on persons with disabilities in humanitarian settings.

Based on a broader desk review of practice-based reports and case studies, this paper also draws on a further range of methods and approaches that have been taken to collect, analyse and use data and information to support inclusion of people with disabilities across different stages of the humanitarian programming cycle, focusing particularly on instances where qualitative information is used in combination with quantitative data. The paper looks at the collection and use of data on the accessibility and inclusiveness of humanitarian programmes, as well as data on the number, needs and capacities of persons with disabilities

Status of disability in Kenya: Statistics from the 2019 census

Development Initiatives
August 2020

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This report presents research that was undertaken as part of Development Initiatives’ work on data to support disability inclusion. It provides analysis of government budget allocations to disability inclusion programmes in Kenya over the period of financial year 2016/17 (FY2016/17) to financial year 2020/21 (FY2020/21). The analysis focuses on disability-relevant ministries, departments and agencies at the national level, including those led by the State Department for Social Protection, the Office of the President, the State Department for Early Learning and Basic Education, and the State Department for Vocational and Technical Training. Due to limitations in the available data, the analysis looks primarily at the education and social protection sectors. This report has been funded with UK aid from the UK government, and was developed with the support of the Inclusive Futures consortium. The opinions expressed are those of the author(s) and do not necessarily reflect the views or policies of the UK government or other members of the Inclusive Futures consortium.

Inclusion Works Uganda Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Uganda?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Uganda, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Uganda. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Inclusion Works Kenya Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Kenya?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Kenya, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Kenya. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Inclusion Works Bangladesh Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Bangladesh?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Bangladesh, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This situational analysis (SITAN) synthesises the most recent existing literature and evidence (drawing on government and non-government sources available online) about Bangladesh generally and on factors relating to persons with disabilities involvement in formal employment.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Inclusion Works Nigeria Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Nigeria?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Nigeria, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

Disability Inclusive Development - Kenya Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Kenya?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Kenya. It will be helpful for anyone interested in disability inclusion in Kenya, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Nepal Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nepal?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nepal. It will be helpful for anyone interested in disability inclusion in Nepal, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

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