Development of core sets for deafblindness using the International Classification of Functioning, Disability, and Health: the perspectives of individuals with lived experience.
Walter Wittich, Shirley Dumassais, Meredith Prain and 6 others
PMID 39387852WHAT IT FOUND
People with deafblindness and caregivers most often described communication, mobility, social interaction, attitudes, family support, personal assistants, and communication technology as central.
These themes can guide assessment and goal setting.
Key findings
01Participants' accounts produced 492 distinct ICF codes and covered 28 of the 30 ICF chapters.
02Communication, socializing, walking around obstacles, interpersonal interactions, and work or employment were the most frequent activity and participation codes.
03Societal attitudes, immediate family, personal care providers or assistants, communication assistive products and technology, and family attitudes were the most frequent environmental codes.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
Participants were recruited by convenience and maximum variation, not by random sampling, so the themes may not represent all people with deafblindness. Some demographic data were incomplete because sites had different resources. Recruitment may have favoured people already known to local partners, reachable, and able to take part. The study was cross-sectional, so it cannot show how abilities change over time. Results were merged across regions, which may hide differences related to local resources or country income level. Children and youth were not analysed separately, so the findings may not capture their specific needs.
Declared interests
The paper does not report a conflict-of-interest statement or funding source. It says Canadian participants received $50 CAD from a local grant.
The easy way to misread this
Do not treat these ICF categories as proof that a therapy works. The study reports participants' experiences and coded themes, not tested interventions or patient outcomes.