According to the report "United Nations World Population Prospects 2022" and the results of the study "Mapping opportunities for deafblind people across Europe", there is an estimated 30 million deafblind people in the world, of whom 14.3 million are over the age of 65. This number is likely to climb, given age-related vision and hearing impairment . While definitions of deafblindness according to the medical model rely on behavioural measures, such as pure tone audiograms and visual acuity/visual field, the most widely accepted definition, i.e. the Nordic Definition from Centre for Welfare and Social Issues(https://kuurosokeat.fi/tiedosto/nordic_definition.pdf) focuses on functional aspects such as difficulties with communication, access to information, mobility, education, employment, and other variables that reflect daily activities and the ability to participate in society. The population of persons living with deafblindness is extremely heterogeneousin terms of time of onset (congenital, prelingual, adult, age-related), order of onset (simultaneous or one sense at a time), and severity (mild, moderate, severe or total): any combination of these variables is possible.
Under the leadership of members of Deafblind International (https://www.deafblindinternational.org/), an international team is currently in the process of developing the ICF Core Sets for deafblindness.
The collaborating organizations providing in-kind support include (please click on the name of the organization to access the respective website):
In Canada - Canadian Helen Keller Centre, Canadian National Institute for the Blind (CNIB), CNIB Deafblind Community Services, Centre de réadaptation en déficience physique Raymond-Dewar Laurier du CIUSSS du Centre-Sud-de-l’Île-de-Montréal, Centre de réadaptation Lethbridge-Layton Mackay du CIUSSS du Centre-Ouest-de l’Île-de-Montréal, Université de Montréal, École d’optométrie, Institut Nazareth et Louis-Braille du CISSS de la Montérégie-Centre,
In other countries- Institución Fátima (Argentina), CRESAM, Centre National de Ressources Handicaps Rares – Surdicécité (France) and Royal Dutch Kentalis (The Netherlands)
Project details can be found in the protocol publication (click the citation to access this open access publication): Paramasivam A, Jaiswal A, Minhas R, Holzhey P, Keyes K, Lopez R, Wittich W. The development of the International Classification of Functioning, Disability and Health Core Sets for deafblindness: A study protocol. PLoS One. 2021 Dec 14;16(12):e0261413.
Summary of project status:
- In 2021, a systematic literature review was performed to identify measures that have been utilized when conducting research with individuals living with deafblindness. The first resulting publication, an overview of these measures, has been submitted for publication. The second publication (linking of these measures to the ICF) is currently in preparation.
- A qualitative study, i.e. interviews with persons living with deafblindness in Spain and Canada, is currently ongoing.
- Data collected in an expert survey that gathered the opinion of international experts with expertise in deafblindness. is currently being analysed, and results are expected to be available in early 2023.
- To describe common problems experienced by individuals with hearing loss from a clinical perspective, data within a multicentre cross-sectional study will be collected from centres in centers in different WHO Regions. Ethics approval has been obtained at the Research Ethics Committee of the Carlos III Institute of Health (Madrid, Spain) and is currently in preparation for additional sites.
NOTE: This project follows the guidelines for developing ICF Core Sets established by the ICF Research Branch. The ICF Research Branch, however, is not an official project partner.