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.

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

INTRODUCTION: The International Classification of Functioning, Disability, and Health (ICF), developed by the World Health Organization, is a classification framework that focuses on the health and functioning of people with disabilities. As part of an ICF Core Set development, four studies need to be conducted, one of which is a systematic review. This study presents part 1 of the systematic review that aims to describe the outcome measures identified in the literature related to functioning in individuals with deafblindness. EVIDENCE ACQUISITION: The research team screened articles from eight scientific databases, three journals, and Google Scholar (March 2011 to September 2022). Articles were included if they studied individuals with deafblindness aged 18 and older. Studies that examined genetics or laboratory experiments involving animals were excluded. Data were extracted into a logbook with key descriptors such as study location and design, age of study population, and instruments/outcome measures used, which were further categorized into one of the following types: 1) standardized; 2) patient-reported measures, standardized (PT-S); 3) patient-reported measures, not standardized (PT-not S); 4) health professional, reported measures, standardized (HP-S); 5) Technical measures; 6) other measures (parent-reported standardized and laboratory measures). EVIDENCE SYNTHESIS: The review included 147 studies, of which most were conducted in Europe (47.6%) and North America (27.9%). Of the 314 identified outcome measures, 57 were Standardized, 59 were Patient Reported-Standardized (PT-S), 178 were patient reported non-standardized (PT-Not S) variables, 11 were health professional reported, standardized, five were technical, and four were classified as other measures. CONCLUSIONS: Most instruments measured functioning in daily activities and the mental health of individuals with deafblindness. Three deafblind-specific instruments were identified in this study, highlighting the need for more deafblind-specific instruments to be developed and utilized in research.

Continuum of Care for Older Adults With Concurrent Hearing and Vision Impairment: A Systematic Review.

Background and Objectives: A global report estimates up to 2% of the world population experience concurrent hearing and vision impairment (dual sensory impairment [DSI]). Older adults with DSI are often frequent users of health care, yet the evidence is limited to inform care delivery for this population. This systematic review aimed to synthesize evidence on tools and strategies for screening, assessment, and interventions that promote a continuum of care for older adults with DSI. Research Design and Methods: The review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews. Electronic databases (CINAHL, Embase, MEDLINE, PsycINFO, Cochrane Library, Global Health, and Web of Science) and clinical trial registries (ISRCTN Registry, WHO ICTRP, and ClinicalTrials.gov) were searched. The quality appraisal was performed using the Mixed Methods Appraisal Tool. Results: Of 4,775 identified references, 28 records were selected. The review identified 7 tools and 7 strategies for DSI-specific screening, assessments, and/or interventions. Some of the most promising tools were the interRAI Community Health Assessment with deafblind supplement, adapted Montreal Cognitive Assessment, and the Severe Dual Sensory Loss screening tool. Useful strategies included the use of alternative forms of communication, assistive devices or technology, education and training for service providers, and training of older adults on the use and maintenance of assistive aids/technology. However, quality appraisal indicated a need for more robust evidence to inform clinical practice. Discussion and Implications: Reviewed evidence pinpointed the need for training for health care providers on DSI-specific challenges and supports and the use of integrated multidisciplinary care for older adults. Future studies need to explore the development and evaluation of tools and interventions to improve the continuum of care for this group. Systematic Review Registration: PROSPERO registration # CRD42020180545.

The development of the International Classification of Functioning, Disability and Health Core Sets for deafblindness: A study protocol.

BACKGROUND: Individuals with deafblindness experience a combination of hearing and vision impairments. The World Health Organization has developed a global framework referred to as the International Classification of Functioning, Disability and Health (ICF) to describe health and functioning. From the full ICF classification, a selection of categories, referred to as ICF Core Sets, provide users with a tool to describe functioning and disability in specific health conditions. There has been no ICF Core Set created for deafblindness. Given that core sets are instrumental in improving clinical practice, research, and service delivery, the aim of this study is to develop an ICF Core Set for deafblindness. METHODS: As part of the preparatory phase in the ICF Core Set development, there are four studies that will be conducted. This includes the [1] systematic literature review that examines the researcher's perspective, [2] qualitative study focusing on the individuals with deafblindness experience, [3] experts survey that looks at health professional's perspective, and [4] empirical study that examines the clinical perspective. The studies will be conducted using the principles outlined by the ICF Research Branch for the development of ICF Core Sets. The systematic literature review protocol was submitted for registration on PROSPERO CRD42021247952. DISCUSSION: An ICF Core Set created for deafblindness will benefit individuals living with deafblindness who are often excluded from social participation, policies, and services. An ICF Core Set for deafblindness will have a significant impact on healthcare professionals, policymakers, researchers, service providers and individuals with deafblindness by facilitating communication among all stakeholder to support the functioning of those with deafblindness.

Informed Consent or Assent Strategies for Research With Individuals With Deafblindness or Dual Sensory Impairment: A Scoping Review.

OBJECTIVE: To synthesize evidence on existing informed consent/assent strategies and processes that enable the participation of individuazls with deafblindness or dual sensory impairment in research. DATA SOURCES: Five scientific databases (PubMed, MEDLINE, Cumulative Index to Nursing and Allied Health, Web of Science, and PsycINFO) and other sources such as Google Scholar, Journal of Visual Impairment and Blindness, and British Journal of Visual Impairment were hand-searched from January 2015 until July 2020. STUDY SELECTION: Studies were selected using a priori inclusion criteria of sensory and cognitive disabilities and focused on consent/assent strategies and processes in research within this population. Articles related to the medical or sexual consent processes were excluded. DATA EXTRACTION: An Excel spreadsheet was used to extract data from the eligible sources. Discrepancies were resolved in discussion with team members. DATA SYNTHESIS: A total of 2163 sources were screened, and 16 articles were included in the review. Seven sources only examined consent strategies, whereas the remaining 8 included a combination of consent/assent and dissent strategies. Using thematic analysis, 3 key themes emerged: consent/assent strategies, researcher capacity, and capacity to consent tools. Key identified strategies included the accessibility of the consent/assent process, building relationships with participants and caregivers, identifying behavioral cues, and communication training for researchers. CONCLUSIONS: Despite the absence of literature on consent/assent strategies within the population with deafblindness, the review found promising strategies applied to individuals with other cognitive or sensory disabilities that researchers can adopt. Researchers are encouraged to use best practices in creating an inclusive research environment to include individuals with deafblindness.