Development of core sets for deafblindness using the International Classification of Functioning, Disability, and Health: the perspectives of individuals with lived experience

BACKGROUND: The needs of people with deafblindness remain poorly understood and addressed globally. This study is part of a larger body of work to develop Core Sets for deafblindness using the International Classification of Functioning, Disability, and Health (ICF) . AIM: To determine the perspectives on functioning of individuals with lived experience of deafblindness as they relate to the ICF. DESIGN: Cross-sectional interview study. SETTING: Global, representing all six regions of the World Health Organization . POPULATION: A diverse cohort of 72 individuals living with deafblindness or as close family members, ranging across the spectrum of severity. METHODS: Qualitative interviews and focus groups were used to explore six open-ended questions about perceived barriers and facilitators to functioning of body functions and structures, activities and participation, and environmental and personal factors. Data were synthesized using content analysis, and the resulting topics were linked to the ICF codes using established linking methodology prescribed by the World Health Organization's ICF Research Branch. Descriptive statistics summarized all demographic data. RESULTS: The analyses of the transcripts uncovered 2534 meaning units, leading to the identification of 492 corresponding distinct codes from the ICF framework, and spanning across 93.33% of coding categories available. Sensory (b2) and Mental Functions (b1) emerged as the most frequent Body Functions (b) codes. Most categories referred to Activities & Participation, with Mobility (d4) being the most frequently mentioned topic. Services, Systems and Policies (e5) was the most frequently used Environmental factor. CONCLUSIONS: Over 93% of the ICF classification categories were accessed to code the data provided by participants, demonstrating the complexity of functioning with deafblindness. This study provides valuable information to shape policy and research by providing representation of lived experience towards the consensus conference for the comprehensive and abbreviated Core Sets for deafblindness. CLINICAL REHABILITATION IMPACT: The inclusion of lived experience provides a holistic understanding of the daily challenges faced by individuals living with deafblindness. By being part of this process, they have a voice in shaping the classification system that will be used to describe their experiences, fostering a sense of ownership and empowerment.