The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures

PARAMASIVAM, Abinethaa; JAISWAL, Atul; BUDHIRAJA, Shreya; HOLZHEY, Peter; SANTHAKUMARAN, Praveena; OGEDENGBE, Tosin; MARTIN, Jana; DAS, Supriya; CÔTÉ, Samuel; HASSID, Romina; JAMES, Tyler G.; KENNEDY, Beth; TANG, Diana; TRAN, Yvvone; COLSON-OSBORNE, Heather; LI CHEN CHE, Muriel; MINHAS, Renu; GRANBERG, Sarah; WITTICH, Walter

doi:10.23736/s1973-9087.23.07890-5

Eur J Phys Rehabil Med

2023

DOI: 10.23736/s1973-9087.23.07890-5

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The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures

Abinethaa PARAMASIVAM,

Atul JAISWAL,

Shreya BUDHIRAJA

et al.

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2024

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Cited by 3 publications

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“…The overview of the process has previously been published, 20 and the systematic literature review protocol was registered with PROSPERO. 21 The resulting manuscripts describing the outcome measures used in deafblindness 22 and the most frequent ICF codes that are linked to these outcomes are currently accepted and under review, respectively, elsewhere. Here, we present the next step in this series of studies, the analysis of data from an international expert survey with professional health and social and service providers working with persons living with deafblindness.…”

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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

WITTICH,

DUMASSAIS,

JAISWAL

et al. 2024

Eur J Phys Rehabil Med

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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.

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confidence: 99%

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

WITTICH,

DUMASSAIS,

JAISWAL

et al. 2024

Eur J Phys Rehabil Med

Self Cite

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The International Classification of Functioning, Disability and Health (ICF) core sets for deafblindness, part II of the systematic review: linking data to the ICF categories

JAISWAL,

PARAMASIVAM,

BUDHIRAJA

et al. 2024

Eur J Phys Rehabil Med

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INTRODUCTION Deafblindness, a health condition with varying combinations of hearing and vision impairment, affects functioning and social participation. In 2001, the World Health Organization (WHO) introduced the International Classification of Functioning, Disability, and Health (ICF) to examine human health and functioning. To use the ICF in clinical practice, smaller categories of ICF codes, referred to as Core Sets, were developed for specific health conditions. However, no ICF Core Set exists for deafblindness. As part of an ICF Core Set development, this paper examines the existing literature from an ICF perspective and links relevant data to the ICF categories. EVIDENCE ACQUISITION The systematic review followed the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA). Articles were selected from eight scientific databases, three journals, and Google Scholar. The research team linked outcome measures and qualitative studies to ICF codes using ICF linking rules. For each measure/qualitative study’s final code list, they included each code only once after eliminating any duplicates. Subsequently, a frequency analysis was conducted, and ICF categories identified in at least five studies were included in the candidate categories list. EVIDENCE SYNTHESIS 147 articles met the eligibility criteria. Most studies were from Europe (N.=70) and North America (N.=41). 316 categories were identified in at least five studies that belong to one of four ICF components. This includes 112 categories in the body function component, 3 categories in body structure, 163 in activities and participation, and 38 in environmental factors. Additionally, 21 personal factors relating to demographics were identified. The most frequent category was listening (category d115) at 82.31%, followed by range of emotions (category b1522) at 78.91%, hearing function (category b230) at 68.03%, and assistive products and technology for communication (category e1251) at 63.27%. CONCLUSIONS As the second part of the first four studies in developing ICF Core Sets for deafblindness, this review described the ICF categories relevant to the functioning of individuals with deafblindness. These categories inform the development of the Core Sets on deafblindness from the researcher’s perspective. The final Core Sets will guide clinical practice, programs, and policies for individuals with deafblindness.

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

WITTICH,

DUMASSAIS,

PRAIN

et al. 2024

Eur J Phys Rehabil Med

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The International Classification of Functioning, Disability and Health Core Set for deafblindness. Part I: a systematic review of outcome measures

Cited by 3 publications

References 28 publications

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

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

The International Classification of Functioning, Disability and Health (ICF) core sets for deafblindness, part II of the systematic review: linking data to the ICF categories

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

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