Persons with Deafblindness
Representing between 0.2% to 2% of the world’s population, persons with deafblindness are a very diverse group and challenged with a unique and distinct disability. They experience varying combination of hearing and vision impairments and inherently require interdisciplinary and specialized support.
Unfortunately, deafblindness is in many countries, and in their care, education and health systems not known enough. As shown in the 1st and the 2nd Global Report of the World Federation of the Deafblind WFDB, persons with deafblindness often struggle to obtain the right support and are often excluded and left behind. Their human rights are often infringed.
They frequently experience participation barriers and social isolation due to environmental factors. Thus, advancing the knowledge of this complex disability is indeed very necessary to improve the functioning and quality of life of individuals with deafblindness.
International Classification of Functioning, Disability and Health ICF
The World Health Organization (WHO) developed the International Classification of Functioning, Disability and Health (ICF). As of May 2001, 191 member states have officially endorsed the ICF.
In contrast to the International Classification of Diseases (ICD), the ICF was developed to focus on health and functioning of an individual with disability.
The ICF is based on a bio-psycho-social model of disability. The ICF aims to capture the functionality of individuals in their contexts despite their impairments while establishing a scientific ground to understand and develop a common language to describe functioning, disability, and health.
Since its inception, the framework has been used for various reasons, including statistical, research, clinical, social policy, and educational purposes. For instance, at the policy level, the framework can help provide a consistent definition for the disability that can be used to develop eligibility criteria for disability pensions, accessibility and accommodation policies.
ICF Core Sets
ICF Core Sets are based on a sub-selection of ICF categories. Such Core Sets have been developed for over 30 specific conditions, including musculoskeletal, neurological, cardiovascular and respiratory conditions, as well as hearing loss, but so far there is no ICF Core Set for deafblindness.
We are now aiming to fill this gap, given that ICF Core Sets are instrumental in improving awareness and recognition, service delivery, clinical practice, and research worldwide.
The ICF Core Sets development process is highly regulated by the ICF Research Office of the WHO, and requires first of all four research phases: 1. systematic literature review (researcher perspective), 2. qualitative study with individuals with deafblindness (lived experience perspective), 3. expert survey (professional perspective), 4. multi-center clinical study (clinical perspective).
Given the scale of this project, global collaboration is required.
ICF Core Sets for Deafblindness: Current State, Final Step
The four research phases are nearly completed. We are therefore working towards the final project step – the International ICF Consensus Conference.
In this Consensus Conference, all partners (experts, researchers, and Individuals with lived experience of deafblindness from across the six regions of the World Health Organization) unite and negotiate final agreement on the ICF codes to be included in the ICF Core Sets for Deafblindness (full and short version).
ICF Consensus Conference
The Consensus Conference will be held on October 7th and 8th 2024 at the Hotel Cala Font in Tarragona, Spain. An on-site conference is necessary for a real participation of persons with deafblindness. The conference serves as a platform to foster collaboration and consensus among all persons concerned and involved, ensuring a comprehensive perspective to inform a Core Set that reflects the most relevant ICF aspects in deafblindness.
DbI Mini Webinars on the Project
1st Mini Webinar, introducing to the ICF: “WHO’s ICF?” (captions and International Signs are provided): https://youtu.be/K_ZctM8Dlog
2nd Mini Webinar, introducing to our work on ICF Core Sets for Deafblindness: “ICF Core Sets?!”
- Part 1, introducing with the initiator of the project, Ricard Lopez, to the project’s history and its importance for advocacy (captions provided): https://youtu.be/HlF9EizaBJA
- Part 2, introducing with the scientific lead of the project, Walter Wittich, to the concept of ICF Core Sets and the step required to develop them (captions and International Signs provided): https://youtu.be/5l9I5FMmTdo
- Part 3, introducing with “Scott” to one participation experience in the work to develop the ICF Core Sets for Deafblindness (captions): https://youtu.be/X8vITemOh8Y
Project Publications
- Paramasivam A, Jaiswal A, Minhas R, et al. The development of the International Classification of Functioning, Disability and Health Core Sets for deafblindness: A study protocol. PLoS One. 2021;16(12 December). doi:10.1371/journal.pone.0261413
- Paramasivam A, Jaiswal A, Budhiraja S, et al. The development of the International Classification of Functioning, Disability and Health Core Set for deafblindness Part I: A systematic review of outcome measures identified in deafblindness research. Eur J Phys Rehabil Med. 2023; accepted. doi:10.23736/S1973-9087.23.07890-5
- Jaiswal A, Paramasivam A, Budhiraja S, et al. The International Classification of Functioning, Disability and Health (ICF) core sets for deafblindness, Part II of the Systematic review: Linking data to the ICF categories. Eur J Phys Rehabil Med. 2024; under revision.
- Wittich W, Dumassais S, Jaiswal A, et al. Development of Core Sets for deafblindness: An international expert survey on functioning and disability of individuals living with deafblindness using the International Classification of Functioning, Disability, and Health. Eur J Phys Rehabil Med. 2024; accepted.