To Örebro University

Purpose: Individuals with deafblindness are a diverse group and require interdisciplinary care. To provide a universal terminology that facilitates communication among stakeholders, the World Health Organization (WHO) developed the International Classification of Functioning, Disability and Health (ICF). A sub-selection of categories, referred to as ICF Core Sets, provides a tool to describe functioning and disability in specific health conditions. As part of a multi-study process of developing a Core Set for deafblindness, we conducted an expert survey for the identification of key concepts.

Methods: An international online survey gathered the opinion of professionals who worked with persons with deafblindness. Six open-ended questions addressed their perceptions on how deafblindness affects body functions and structures, activities, and participation, and how personal and environmental factors act as barriers and/or facilitators in everyday life with deafblindness. Survey responses were analysed using content analysis, and meaningful concepts were linked to the ICF codes using linking rules established by the WHO.

Results: Of the 205 complete responses, 100 stratified respondents were selected across the WHO regions: Africa (n = 8), the Americas (n = 31), South-East Asia (n = 22), Europe (n = 25), Western Pacific (n = 14). Professions included optometry, ophthalmology, low vision therapy, occupational therapy, intervenor/interpreter, social work, rehabilitation counselling, O&M, and psychology, among others. The most frequent codes linked to body structures were eye, ear (s299), and nervous system (s1). Most prevalent body function codes included seeing (b210), hearing (b230), tactile perception (b1564) and touch (b265). For activity and participation, experts identified communication (d399), carrying out daily routine (d2309), and learning and applying knowledge (d199) as main concepts. Environmental variables focused on societal attitude (e460), human caused events (e235), light (240) and sounds (e250).

Conclusions: The expert views that are not easily coded using the ICF were global effects of deafblindness that affect all aspects of functioning, as well as those that are progressive over time. Next, the ICF codes reported by at least 5% of the experts will be included in the list of candidate categories for an international consensus conference.