ArticleEuropean journal of physical and rehabilitation medicine2024
Development of core sets for deafblindness using the International Classification of Functioning, Disability, and Health: the perspectives of individuals with lived experience.
Article in European journal of physical and rehabilitation medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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Who cites it
5 citing papers in PubMed.
- Article
- Deafblindness in Aotearoa, New Zealand: Prevalence and Equity Challenges From a Cross-Sectional Census Analysis.Asia-Pacific journal of public health · 2026Article
- Comparing perspectives from experts and individuals with lived experience in the Global North versus the Global South: ICF core sets for deafblindness.Population health metrics · 2026Article
- Article
- Unique Functional Profiles in Deafblindness: Evidence From a Comparative Analysis of ICF Core Sets.Advances in rehabilitation science and practiceArticle
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Authors and funding
9 authors.
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No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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).
aimTo determine the perspectives on functioning of individuals with lived experience of deafblindness as they relate to the ICF.
designCross-sectional interview study.
settingGlobal, 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.
methodsQualitative 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.
resultsThe 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.
conclusionsOver 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.
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