Development of a Core Set for Deafblindness using the International Classification of Functioning, Disability and Health – Phases 2 & 3

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Grant award: $100,000

Principal Investigator:
Name: Walter Wittich, PhD
Institution: École d’optométrie, Université de Montréal, Quebec
Co-Principal Investigator:
Name: Sarah Granberg, PhD 
Institution: Örebro University, School of Health Sciences, Sweden
Name: Mahadeo Sukhai, PhD 
Institution: Canadian National Institute for the Blind (CNIB)
Name: Atul Jaiswal, PhD 
Institution: Bruyère Research Institute, Ontario 
Name: Serge Maynard, MSc. 
Institution: Centre de réadaptation Lethbridge-Layton Mackay du CIUSSS du Centre-Ouest-de l’Île-de-Montréal, Quebec
Name: Genevieve Lizé, BSc., erg. 
Institution: Institut Nazareth et Louis-Braille du CISSS de la Montérégie-Centre, Quebec
Name: Sherry Grabowski 
Institution: CNIB Deafblind Community Services
Name: Sonja Van de Molengraft, MSc 
Institution: Directrice CRESAM, Centre National de Ressources Handicaps Rares – Surdicécité, France  
Name: Frank Kat, MSFM  
Institution: Deafblind International & Royal Dutch Kentalis, Netherlands
Name: Ricard Lopez 
Institution: European Deafblind Network, Spain 
Name: Renu Minhas, MA 
Institution: Deafblind Ontario Services
Name: Jennifer Robbins  
Institution: Canadian Helen Keller Centre

Our team aims to answer the question “What are the most relevant codes within the ICF classification system that best describe body functions and structure, activities and participation, as well as environmental factors as they pertain to individuals living with deafblindness?” We will identify these codes from the perspective of persons living with deafblindness and their allies (Phase 2), professionals working with this population (Phase 3) and through an applied exploration of clinical assessments of persons living with deafblindness by experts in the field (Phase 4). 

The synthesis of the results across these phases (consensus conference in year 2) will result in the presentation of the ICF Core Set for deafblindness, which will then be included in the ICF Core Set documentation tool of the ICF Branch of the World Health Organization and will be published in scientific journals and presented in various national/international conferences.

The Core Set will improve our understanding of how deafblindness affects functioning in society. This understanding will significantly facilitate the functioning and quality of life of those living with deafblindness at the individual, institutional, and societal levels. With the growing population living by deafblindness (especially older adults with acquired impairments), there is a greater demand for policies and services that meet their unique needs. An ICF Core Set for deafblindness will benefit the deafblind population not only in Canada but across the globe who are often excluded from social participation, policies, and services.