This article takes stock of a vast international project, under the scientific direction of Walter Wittich, to define the biopsychosocial criteria for deafblindness
What is deafblindness? More than the addition of two handicaps, deafblindness creates very specific challenges, since the loss of one sense is difficult to compensate for by another. As the definition of deafblindness varies widely around the world, recognition of the condition and the services available vary widely. "Quebec offers rehabilitation services specifically for deafblindness, whereas in some countries this disability is not recognized at all, and the burden remains on the family," says Walter Wittich, professor at the Université de Montréal’s School of Optometry.
The idea of having deafblindness recognized as a unique disability originated in Europe, at the instigation of a politician and father of a deaf-blind child. "In his efforts to find health services for his daughter, he saw the difficulties of having services on one side for vision and on the other for hearing. It was time for this to be discussed on the political and international scenes," he says.
Establishing codes
In 2001, the World Health Organization (WHO) created the International Classification of Functioning, Disability and Health, a system of criteria that harmonizes understanding of diseases, but above all defines how a condition affects an individual’s functioning at home and in society. "It’s a biopsychosocial model that frames the way we think about disease, beyond medical treatment," explains the professor.
This classification comprises over 1400 codes that depict every possible functional aspect for a human being. "In theory, we can use this type of coding to describe a person, but we can also group together codes specific to a disease," he explains. Over and above language and cultural barriers, these codes make it easier to recognize the challenges posed by a disability, thanks to the common language that is thus established. "I can easily collaborate with people from all over because we use the same codes," he asserts. An international multidisciplinary research team, under the scientific direction of Walter Wittich, set about defining this battery of priority codes for deafblindness. The results of the experiment have been published in the British Journal of Visual Impairment.
A four-stage process
The definition process, overseen by the WHO, comprises four stages. After a literature review to identify research priorities, the scientists conduct interviews with deaf-blind people, as well as a survey of professionals working with them (from ophthalmologists to nurses to interpreters). The final part ingests clinical insight by examining service assessment situations. "In each phase, we needed to have representation from every region of the world. It’s an unimaginable task", Walter Wittich points out.
All the selected codes were then presented at a consensus conference held in Spain in October 2024. After four years’ work, three lists were drawn up. The long list (218 codes) covers aspects that are useful for administrative, legal and other purposes. "It is used, for example, to justify services that are paid for by health insurance or covered by a Ministry of Health," he points out. The medium list includes codes important for interprofessional clinical communication, while the short list (33 codes) contains essential things to consider in an individual clinical context.
Carrying on, despite the challenges
As this first adventure draws to a close, Professor Wittich is now embarking on the same exercise for children and young people affected by deafblindness: "The causes and consequences of deafblindness are very different in children and in people with acquired deafblindness. It is therefore relevant to develop a battery of codes for them", he believes. The process will be repeated for people who express themselves in sign language, and then for people aged 60 and over.
The researcher hopes that the unique perspectives of deafblind people will (finally) be taken into account. "Deafblind people are under-represented in research for a number of reasons," he notes. Firstly, communication is complicated, as many have not learned to read or write, and interpreters are quite rare. Deaf-blind people also often have to fight to be included in research groups and not have decisions made for them. "I had to build a relationship of trust with the deaf-blind members of my team," he notes. This international exercise will enable us to offer services that are truly adapted to their needs.
About these studies
The article "The WHO ICF comprehensive Core Set for deafblindness: A narrative overview of the development process", by Walter Wittich and his student, was published in the British Journal of Visual Impairment.
The article "Development of the International Classification of Functioning, Disability and Health Core Sets for children and youth with deafblindness: Protocol for a multistudy collaboration across regions of WHO", by Walter Wittich and his student, appeared in BMJ Open
