To Örebro University

Purpose: The World Health Organization's (WHO) International Classification of Functioning, Disability and Health (ICF) provides a comprehensive and universally applicable health terminology framework. ICF-derived Core Sets make the coding system more usable with a concise set of condition-specific codes. These Core Sets are developed in collaboration with the affected population, in this case, individuals living with deafblindness. The study aimed to identify which aspects of body structure & functioning, activities & participation, and which environmental and personal factors are the most important to people living with deafblindness.

Methods: We conducted semi-structured interviews and focus group sessions with 62 individuals with deafblindness and/or informal caregivers (e.g., parents). They were recruited from 9 countries (Canada, Mexico, Australia, Spain, UK, France, Zambia, Egypt, India) to represent the 6 WHO regions. All participants responded to 6 open-ended questions on physical, functional, and environmental variables that influence activity and participation.

Results: Participant comments were coded using thematic analysis, resulting in 497 unique codes. These highlighted priority themes, including the eye, ear, and related structure (s2), structures related to movement (s7); and mental (b1) as well as sensory functions (b2). Activities and participation codes comprised most of the data (43%), with mobility (d4) and communication (d3) being mentioned most often. Among environmental factors, codes related to services, systems, and policies (e5) and products and technology (e1) were the largest proportional groups. Additionally, coping with the COVID-19 pandemic, general health status, and age emerged as personal factors.

Conclusions: This study provides crucial insights related to priorities of individuals living with deafblindness, as far as sensory functions, emotional well-being, and societal barriers are concerned. Their complexity and variability underscore the necessity of developing a tailored ICF Core Set for deafblindness, with potential implications for more effective healthcare, rehabilitation, and support services for this unique population.