Development of core sets for deafblindness: an international expert survey on functioning and disability of individuals living with deafblindness using the International Classification of Functioning, Disability, and Health.

Background: The development of International Classification of Functioning, Disability, and Health (ICF) Core Sets greatly enhances the global recognition of health conditions, thereby advancing research, education, and care provision. Aside from the work of researchers, and the viewpoint of persons with lived experience, the development of Core Sets for deafblindness needs to include the viewpoints of professionals with expertise unique to this condition.

Aim: To represent the perspective of health and social service expert professionals in the development of ICF Core Sets for deafblindness.

Design: Cross-sectional cohort study.

Setting: Global online survey representing all six regions of the World Health Organization.

Population: One hundred and five professionals providing and health or social service to individuals living with deafblindness with a minimum of 2 years of work experience with this population.

Methods: An online survey was distributed through professional networks and social media for individuals working with persons living with deafblindness. Demographic items were summarized using descriptive statistics. Six open-ended questions explored the perceptions of body functions and structures that influence activities and participation, as well as environmental and personal factors that facilitate functioning. Data were linked to the ICF codes using established linking rules and procedures.

Results: The 2934 survey response units were linked using IFC categories. Of the 421 unique categories, 133 were used by 5% or more of respondents. Most categories within the Activities and Participation component were equally emphasized. The most frequent Environmental factors were support and relationships, services, systems, and policies, as well as and the physical environment (e.g., hearing aids or noise). Mental functions, including higher level cognitive functions, temperament and personality were frequently emphasized.

Conclusions: Almost three quarters (73.3%) of the entire ICF classification categories were included in the expert survey results. This proportion emphasizes the importance of a multidimensional tool, such as the ICF, for assessing functioning and health for persons with deafblindness.

Clinical rehabilitation impact: The representation of this professional perspective in Core Set development will improve standardized assessment and documentation, intervention planning, and facilitate interprofessional communication with the goal of improving person-centered care for persons living with deafblindness.