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.

How resilient were we in 2021? Results of a LinkedIn Survey including biomedical and pharmaceutical professionals using the Benatti Resiliency Model.

Enhancing resiliency should elevate innovation and efficiency in biomedical research and development (R&D); however, compared with other professions, data on practice of resilience is lacking. Using the Benatti Resiliency Model (5 anchors: Well-Being, Self-Awareness, Brand, Connection, and Innovation), we surveyed professionals, including those in biomedical and pharmaceutical R&D. A structured LinkedIn questionnaire (March 16-May 23, 2021), surveyed each model anchor using five categories. One hundred fifty-eight participants (~6% student/trainee, 18%, 27%, and 49% in 1-5, 5-15 or >15 years post-terminal degree) took the survey (90 in biomedical and pharmaceutical R&D). Over 50% chose "always"/"often" across questions, except external influence or engagement. The question with one of the lowest "always" scores (~15%) was "I get feedback on my influence and impact in my career" in Brand, highlighting areas for leadership development and coaching. In the anchor of Well-being, nutrition and stress management also received some lowest "always" scores (~15% for both). Connection and Innovation scores trended slightly higher in biomedical and pharmaceutical R&D. No students/trainees chose "always" in Brand, indicating evolution of brand maturity over time. Self- and survey-assessed resiliency scores were associated (rs  = 0.37, p < 0.0001). Our survey yielded actionable insights on Resilience, including "best practices" through an open-ended question for one thing most useful to boost resilience in the survey and is the first application of the Benatti Model for crowdsourced research.

South Carolina Area Health Education Consortium Disaster Preparedness and Response Training Network: an emerging partner in preparedness training.

The South Carolina Area Health Education Consortium (SC AHEC) was funded in 2003 to train healthcare professionals in disaster preparedness and response. During the 5 years of funding, its Disaster Preparedness and Response Training Network evolved from disaster awareness training to competency-based instruction and performance assessment. With funding from the assistant secretary for preparedness and response (ASPR), a project with implications for national dissemination was developed to evaluate 2 aspects of preparedness training for community-based healthcare professionals. The SC AHEC designed disaster preparedness curricula and lesson plans, using a consensus-building technique, and then (1) distributed sample curricula and resources through the national Area Health Education Center system to assess an approach for providing preparedness training and (2) delivered a standardized preparedness curriculum to key influential thought leaders from 4 states to evaluate the effectiveness and acceptability of the curriculum. As a result of this project, the SC AHEC recommends that preparedness training for community-based practitioners needs to be concise and professionally relevant. It should be integrated into existing healthcare professions education programs and continuing education offerings. The project also demonstrated that although AHECs may be interested and well suited to incorporate preparedness training as part of their mission, more work needs to be done if they are to assume a prominent role in disaster preparedness training.