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Ear and hearing survey handbook

WORLD HEALTH ORGANISATION (WHO)
May 2020

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This survey handbook provides guidance for planning and implementing hearing loss surveys, including information on possible data collection tools. The survey handbook aims to enable countries – particularly low- and middle-income countries – to gather data by planning and implementing population-based epidemiological surveys.

The main uses of data collected by such surveys are:

  • to provide an accurate picture of hearing loss prevalence in a given area, which could be a country or an area within the country (e.g. district or state);
  • to provide an overview of the most common probable causes of deafness and hearing loss in the study area;
  • assess global and regional prevalence and trends

 

Using this survey handbook for data collection will help to ensure comparability of data collected through studies conducted in different countries and by different investigators. This will facilitate the estimation of global prevalence and the examination of hearing loss trends over time.

Model disability survey of Afghanistan 2019

AKSEER SHINWARI, Nadia
AKSEER, Tabasum
KAMALA, Madhis
May 2020

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Led by The Asia Foundation (the Foundation) in Kabul, Afghanistan, the WHO’s and World Banks’ Model Disability Survey (MDS) was implemented in Afghanistan in 2019 to provide rigorous and current data for policy and action. Using an adapted MDS, the MDSA 2019 was designed and implemented to generate representative data at nationally and regionally representative levels.

 

A complex survey using multistage sampling was administered respectively to adult (18+ years) and child (2–17 years) populations; a total of 14,290 households were surveyed, representing 111,641 Afghans across the country. Separate survey tools were implemented for adults (157 questions) and children (53 questions). Three core tools were developed covering: 1) household characteristics; 2) adult disabilities (related to functioning, health conditions, personal assistance, assistive products and facilitators, health care utilization, well-being and empowerment); 3) child disabilities (related to functioning and health conditions)

Validation of the International Classification of Functioning, Disability and Health (ICF) core set for Diabetes Mellitus from nurses’ perspective using the Delphi method

WILDEBOER, Anita T
STALLINGA, Hillegonda A
ROODBOL, Petrie F
May 2020

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Purpose: To explore content validity of the ICF core set for Diabetes Mellitus from nurses’ perspective.

 

Materials and methods: A two-round Delphi study was conducted with nurses specialized in diabetes care, who were recruited by purposive sampling. Level of agreement on relevance of ICF categories was calculated using Item-level Content Validity Index.

 

Results: Twenty-seven nurses judged 147 second-level ICF categories on relevance for people with Diabetes Mellitus. Agreement was reached on 65 (44.2%) categories, of which 46 were from the ICF core set for Diabetes Mellitus, 17 were from previous validation studies, and two were additional categories that were mentioned as relevant. Forty-six out of the 65categories were derived from the component body functions and structures. No agreement was reached on 82 (55.8%) categories, of which 33 were derived from the component environmental factors.

 

Conclusions: Content validity of the ICF core set for Diabetes Mellitus was partially supported by specialized nurses. Agreement was predominantly reached on biomedical categories. Content validity of categories derived from environmental factors received little support.

 

Relevance: The nursing profession should be aware of a gap between the current biomedical focus and the desired biopsychosocial approach; the latter of which is recommended in chronic care.

COVID-19 Disability Rights Monitor

2020

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Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency measures being taken by governments worldwide. As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive of persons with disabilities and prevent human rights violations from taking place.

 

With the endorsements of the United Nations Special Rapporteur on the Right to Health, Mr Dainius Pūras, and the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms Catalina Devandas Aguilar, a coalition of six disability rights organisations is today launching a major international monitoring initiative entitled “COVID-19 Disability Rights Monitor” to conduct rapid independent monitoring of state measures concerning persons with disabilities. The first element of this global initiative is the launch of two surveys requesting official information from governments and requesting the testimonies of persons with disabilities and their representative organisations. The surveys aim to collect information about what states are doing to protect core rights of persons with disabilities including the rights to life, access to health and essential services.

Labour market date for persons with disabilities (i2i webinar)

EUROPEAN DEVELOPMENT FORUM
April 2020

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On April 22nd 2020, the European Disability Forum organised the fourth of a series of webinars about the Innovation to Inclusion project (also called i2i programme). 

Four speakers were invited to talk about Labour Market Data for persons with disabilities. After their presentation, there was some time for questions and answers.

 

  • Mark Carew (Leonard Cheshire) spoke briefly about i2i’s approach to disability data and how i2i supports a good quality collection of disability data.
  • Valentina Stoevska (Department of Statistics, International Labour Organisation) explained the objectives of the statistical data on the labour market characteristics of persons with disabilities. She talked about the use of Washington Group questions on the disability Labour Force Surveys. To conclude her presentation, Ms Stoevska briefly illustrated with some statistics the employment characteristics of persons with disabilities.
  • Robert Buluma (Governance, Peace and Security statistics of the Kenya National Bureau of Statistics) briefly provided some information on the development of a disability monograph.
  • Anderson Gitonga (United Disabled Persons of Kenya (UDPK)) spoke about the importance of the meaningful participation of persons with disabilities in data gathering and touched upon the technical working group that has been formed in Kenya.

Aid Connect Inclusion Works (NIGERIA) Qualitative Formative Research

BBC Media Action
April 2020

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BBC Media Action is implementing a Department for International Development (DfID) funded project aimed at increasing action and investment from private, public and civil society actors to enable economic inclusion for women and men with disabilities through employment, with focus on FCT, Lagos and Kano states. The formative research provides insights to help (re)shape the design and implementation of media capacity strengthening activities on the project.

 

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 measurement in household surveys : A guidebook for designing household survey questionnaires (English). LSMS guidebook.

TIBERTO, Marco
COSTA, Valentina
January 2020

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This Guidebook supports the implementation of the Washington Group Short Set (WG-SS) – a set of questions designed to identify (in a census or survey format) people with a disability – in multi-topic household surveys, towards improving the collection of disaggregated disability data. The first section presents an overview of the disability definitions in the sociopsychological literature, exploring how disability is defined and who is considered disabled. The second section looks at three different methods for capturing disability in multi-topic household surveys: the Washington Group (WG) question sets, the World Health Organization (WHO) survey instruments for disabilities, and the Demographic and Health Surveys (DHS) module on disabilities. The third section presents the six core WG-SS functional domains, ‘seeing’, ‘hearing’, ‘walking’, ‘cognition’, ‘selfcare’, and ‘communication’, that are intended for the general population five years of age and above. Finally, the Guidebook offers a series of recommendations for ensuring the improvement of disability data collection in multi-topic household survey.

Disability-inclusive disaster recovery (Disaster Recovery Guidance Series)

ROBINSON, Alex
2020

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This guidance note provides action-oriented direction for government officials and decision-makers with responsibility for post-disaster recovery and reconstruction. The guidance will enable the development of disability-inclusive planning and programming across sectors and government. The note is expected to be of interest to wider government and non-government actors, including disabled persons’ organizations (DPOs), concerned with inclusive recovery.

Inclusion Counts: Disability Data Tracker. A data collection and advocacy guideline for Organisations of Persons with Disabilities. (Spotlight on adequate standard of living and social protection)

ADAMS, Lisa
2020

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This guideline is intended to be a tool for Organisations of Persons with Disabilities (OPDs) and their allies on how to advocate for the rights of persons with disabilities within the global development framework known as the Sustainable Development Goals (SDGs). The thematic focus of this guideline is on an adequate standard of living and social protection.

 

The guideline has three main parts:

  • Introduction and overview
  • Assessment tool to evaluate where your country or sub-national region is in terms of implementation of CRPD Article 28
  • Advocacy strategies to support implementation of CRPD Article 28 within the SDGs

 

The guideline also includes Annexes with further tools, resources and good practice case studies

How well is aid targeting disability?

WALTON, Dan
December 2019

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A blog explaining and categorising how international aid has been allocated to projects in a primary or a secondary disability component. It further classifies disability-relevant projects according to their particular focus on one or more of two areas:

Inclusion and empowerment projects have a focus on ensuring people with disabilities are included in benefits on an equal basis to people without disabilities.
Economic empowerment projects are a subset of inclusion and empowerment projects that have the deliberate purpose of improving employment opportunities and rights for people with disabilities.

 

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.

Integrating geospatial data and measures of disability and wealth to assess inequalities in an eye health survey: An example from the Indian Sunderbans

MOHANTY, Soumya
et al
December 2019

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The Sunderbans are a group of delta islands that straddle the border between India and Bangladesh. For people living on the Indian side, health services are scarce and the terrain makes access to what is available difficult. In 2018, the international non-governmental organisation Sightsavers and their partners conducted a population-based survey of visual impairment and coverage of cataract and spectacle services, supplemented with tools to measure equity in eye health by wealth, disability, and geographical location. Two-stage cluster sampling was undertaken to randomly select 3868 individuals aged 40+ years, of whom 3410 were examined

 

Int J Environ Res Public Health. 2019 Dec; 16(23): 4869

doi: 10.3390/ijerph16234869

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.

Disability Data Lab learning paper: a practical guide to disability data

JENKINSON, Astrid
et al
December 2019

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The Bond Disability and Development Group (DDG) has commissioned this learning paper to summarise discussions which took place at the DDG’s Data Lab workshop, held in London on 22 October 2019, and to be used as a reference document going forward. This first workshop focused on why organisations need to collect disability data; what tools are available and practical ways in which these can be used. This learning paper provides a summary of these discussions and can act as a guide and reference tool for organisations looking to be more inclusive in their programming, generally, and in their data collection practices, specifically. A number of case studies and numerous resource references are provided.

IASC Guidelines, Inclusion of persons with disabilities in humanitarian action

INTER-AGENCY STANDING COMMITTEE (IASC)
November 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.

Unimproved water sources and open defecation are associated with active trachoma in children in internally displaced persons camps in the Darfur States of Sudan

MACLEOD, C K
October 2019

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To estimate the proportion of children with trachomatous inflammation—follicular (TF) and adults with trachomatous trichiasis (TT) in internally displaced persons (IDP) camps in the Darfur States of Sudan and to evaluate associated risk factors. 

A random-effects hierarchical model was used to evaluate factors associated with TF and TT. Thirty-six IDP camps were represented in the survey data in which 1926 children aged 1–9 years were examined, of whom 38 (8%) had TF. Poor sanitation, younger age and living in a household that purchased water from a vendor were associated with TF in children aged 1–9 years.

 

Transactions of The Royal Society of Tropical Medicine and Hygiene. 2019 Oct 11;113(10):599-609

DOI:10.1093/trstmh/trz042

India’s disability estimates: Limitations and way forward

RAKHI, Dandona
et al
September 2019

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With India preparing for the next decennial Census in 2021, disability estimates and data collection methodology between the Census 2011 and the most recent population-level survey for India and its states were compared, to highlight the issues to be addressed to improve robustness of the disability estimates in the upcoming Census.

 

Data from the Census 2011 and from two complementary nationally representative household surveys that covered all Indian states with the same methodology and survey instruments–the District-Level Household Survey-4 (DLHS-4, 2012–2013) and the Annual Health Surveys (AHS three rounds, 2010–11, 2011–12 and 2012–13) were used. Data from DLHS-4 and AHS 2012–13 round were pooled to generate estimates for the year 2012–13. Data collection methodology between the sources was compared, including the review of definitions of each type of disability. The overall, mental, visual, hearing, speech, and movement disability rate (DR) per 100,000 population were compared between the sources for India and for each state, and the percent difference in the respective rates was calculated
 

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio

SJODAHL HAMMARLUND, Catharina
LEXELL, Jan
BROGARDH, Christina
August 2019

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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.

 

Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.

 

Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.

 

Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.

Rehabilitation for the realisation of human rights and inclusive development

COLE, Ellie
et al
July 2019

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This report illustrates how rehabilitation contributes to achievement of several of the Sustainable Development Goals (SDGs), improves global health, and promotes the realisation of human rights for all. The purpose of this report is to provide evidence to stakeholders upon which to build successful strategies to improve the availability of quality, coordinated, affordable, and user-centred rehabilitation. By situating disability and rehabilitation within global discourse and policy, it is intended to provide guidance on the implementation of effective rehabilitation-focused policy and practice, contributing to progress towards global development goals.

SDGs 1,3,4,5,8, 10 and 11 are considered

The report concludes with sets of specific recommendations for different stakeholders (states, donors and civil society, including disabled people’s organisations), which have the potential to strengthen rehabilitation services and improve the health and wellbeing of millions around the world. Included in annex are case studies of government donors and their progress towards meeting the recommendations set out in this report. These case studies are intended to serve as examples for stakeholders for how some of the recommendations have already been included within national policies and activities, where gaps exist and identify areas for improvement.
 

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