Visualizing Worldwide Prevalence of Age-Related Dual Sensory Loss.

Objectives: This study aims to create a first visualization of global prevalence of age-related dual sensory loss (DSL), significantly affecting older people's quality of life. Methods: Data from World Health Organization (WHO) regions, particularly African, American, and European, were analyzed. The study focused on DSL onset and prevalence, using adjusted life expectancy for regional comparison. Results: There were notable regional variations in DSL onset and prevalence. The African region showed consistent data, thanks to standardized methods from the World Federation of the Deafblind. However, global patterns varied when adjusted for life expectancy, hinting at possible DSL prevalence stabilization at older ages. Discussion: The study identifies a lack of standardization in DSL prevalence research regarding definitions, methodologies, and reporting. It calls for more uniform and thorough research methods for accurate global DSL understanding. The research highlights the complexity and challenges in determining DSL prevalence worldwide.

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

BACKGROUND: The 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). AIM: To determine the perspectives on functioning of individuals with lived experience of deafblindness as they relate to the ICF. DESIGN: Cross-sectional interview study. SETTING: Global, 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. METHODS: Qualitative 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. RESULTS: The 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. CONCLUSIONS: Over 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.

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.

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.

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.

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.

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.