Reabilitação de Baixa Visão: um problema nascente

Introduction: People with low vision need a vision rehabilitation process that allows them to optimize their remaining vision and thus mitigate the impact of the disability. Objective: To describe the conditions for access to vision rehabilitation in Bucaramanga and its metropolitan area. Materials and Methods: A collective case study was conducted by taking elements from phenomenology. The theoretical position of Andersen and collaborators was assumed. Semi-structured interviews were conducted with 11 patients and professionals involved in care and rehabilitation residing in municipalities in the metropolitan area of Bucaramanga. The analysis was done in three stages: discovery, coding, and interpretation of the data. Results: Two categories emerge from the study: 1) Vision rehabilitation: An incipient issue, and 2) People with low vision experience in low vision management care processes; the latter with the following subcategories: Failures in the identification and orientation to low vision management and difficulties in attending clinical care and accessing devices. Discussion: Describing the conditions for accessing rehabilitation services can contribute to designing intervention strategies to address the identified barriers. Conclusions: The consequences of low vision can be mitigated by accessing rehabilitation processes; however, in the four participating municipalities, people face multiple barriers to rehabilitation. This situation evidences the need to establish mechanisms that allow people with visual impairments to exercise their right to health. How to cite this article: Oviedo-Cáceres Maria del Pilar, Arias-Pineda Karen Natalia, Palencia-Flórez Diana Cristina. Rehabilitación de la baja visión: Un asunto incipiente. Revista Cuidarte. 2023;14(2):e2665. http://dx.doi.org/10.15649/cuidarte.2665Highlights: Se describen fallas en la identificación y orientación de la baja visión y las posibilidades para su rehabilitación. La rehabilitación de la visión es inicipiente, pues se limita a intervenciones clínicas diagnósticas y prescripción de dispositivos. Las consecuencias de la baja visión pueden ser atenuadas al acceder a procesos de rehabilitación; sin embargo, existen falencias de recurso humano, infraestructura y estructurales del sistema de salud. Es prioritario fortalecer la formación del recurso humano en salud visual para hacer frente a las necesidades de rehabilitación visual. Introducción: Las personas con baja visión requieren de un proceso de rehabilitación de la visión que les permita optimizar su resto visual, mitigando así el impacto de la discapacidad. Objetivo: Describir las condiciones del acceso a la rehabilitación de la visión en Bucaramanga y su Área Metropolitana. Materiales y Métodos: Se realizó un estudio de caso colectivo tomando elementos de la fenomenología.  Se asumió la postura teórica de Andersen y colaboradores. Se realizaron entrevistas semi-estructuradas a 11 pacientes y profesionales involucrados en la atención y rehabilitación, residentes en municipios del área metropolitana de Bucaramanga. El análisis se hizo en tres momentos: descubrimiento, codificación e interpretación de los datos.  Resultados: Dos categorías emergen del estudio:  1. Rehabilitación de la visión: Un asunto incipiente. 2. Experiencia de las personas con baja visión frente a los procesos de atención para el manejo de la baja visión, con sus subcategorías: Fallas en la identificación y orientación frente al manejo de la baja visión y Dificultades para asistir a las atenciones clínicas y acceso a dispositivos. Discusión: Describir las condiciones de acceso a los servicios de rehabilitación puede contribuir a generar estrategias de intervención que permitan abordar las barreras identificadas. Conclusiones: Las consecuencias de la baja visión pueden ser atenuadas al acceder a procesos de rehabilitación; sin embargo, en los cuatro municipios participantes las personas experimentan múltiples barreras para lograr su rehabilitación, lo que evidencia la necesidad de establecer mecanismos que permitan el ejercicio del derecho a la salud de las personas con discapacidad visual. Como citar este artículo: Oviedo-Cáceres Maria del Pilar, Arias-Pineda Karen Natalia, Palencia-Flórez Diana Cristina. Rehabilitación de la baja visión: Un asunto incipiente. Revista Cuidarte. 2023;14(2):e2665. http://dx.doi.org/10.15649/cuidarte.2665Introdução: As pessoas com baixa visão necessitam de um processo de reabilitação visual que lhes permita otimizar o descanso visual, mitigando assim o impacto da deficiência. Objetivo: Descrever as condições de acesso à reabilitação visual em Bucaramanga e sua Área Metropolitana. Materiais e Métodos: Realizou-se um estudo de caso coletivo a partir de elementos da fenomenologia. foi assumido posição teórica de Andersen e colaboradores. Foram realizadas entrevistas semiestruturadas com 11 pacientes e profissionais envolvidos no cuidado e reabilitação, residentes em municípios da área metropolitana de Bucaramanga. A análise foi feita em três momentos: descoberta, codificação e interpretação dos dados. Resultados: Duas categorias emergem do estudo: 1. Reabilitação da visão: uma questão emergente. 2. Vivência das pessoas com baixa visão quanto aos processos de cuidado para o manejo da visão subnormal, com suas subcategorias: Falhas na identificação e orientação quanto ao manejo da visão subnormal e Dificuldades no atendimento clínico e acesso aos dispositivos. Discussão: Descrever as condições de acesso aos serviços de reabilitação pode contribuir para gerar estratégias de intervenção que permitam enfrentar as barreiras identificadas. Conclusões: As consequências da baixa visão podem ser mitigadas com acesso a processos de reabilitação; no entanto, nos quatro municípios participantes, as pessoas enfrentam múltiplas barreiras para alcançar sua reabilitação, o que mostra a necessidade de estabelecer mecanismos que permitam às pessoas com deficiência visual exercer o direito à saúde. Como citar este artigo: Oviedo-Cáceres Maria del Pilar, Arias-Pineda Karen Natalia, Palencia-Flórez Diana Cristina. Rehabilitación de la baja visión: Un asunto incipiente. Revista Cuidarte. 2023;14(2):e2665. http://dx.doi.org/10.15649/cuidarte.266

“My disability does not measure me: it is a way of living and being in the world” meanings of social inclusion from the perspective of people with visual impairment

Social inclusion involves the dynamics that link the development of capacities with access to opportunities, well-being, relationship networks, and the exercise of citizenship. This study sought to understand the meanings on social inclusion of people with visual impairment from four cities in Colombia, as well as the family dynamics that favor or hinder inclusion processes. A qualitative exploratory study was conducted, by applying 26 semi-structured interviews via telephone. The interviews were transcribed and the themes extracted by the authors. The three emerging categories were the following: (1) My disability does not measure me: it is a way of living and being in the world; (2) deconstructing imaginaries: a wager on inclusion; and (3) from the family, the most important is letting be. Our results indicate that social inclusion is mediated by the meanings they assign to their own condition of visual impairment, by the existing social imaginaries on the theme, and by the family dynamics or the nearby environment. The work recognized the following as facilitators: acceptance of the disability by those who have the condition and by their close environment; recognition of the disability as part of human diversity; the family as actor that recognizes, respects individuality, and promotes their development; and the individual skills to cope with the situation and find a support network. Barriers were the negative imaginaries and the biomedical view that persist in society, which interact with the daily lives of the people, thus generating situations of exclusion.The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Project was cofunded by Colombia’s National Institute for the Blind and Universidad Santo Tomás-Bucaramanga. Research project: Configuration of daily practices undertaken by people with visual impairment, their families, and/or the nearby environment that permit identifying barriers and facilitators for social inclusionPeer ReviewedObjectius de Desenvolupament Sostenible::10 - Reducció de les DesigualtatsObjectius de Desenvolupament Sostenible::3 - Salut i BenestarPostprint (author's final draft

Prácticas asumidas por docentes y estudiantes con discapacidad visual, para la educación inclusiva en tiempos de Covid-19 en la USTA-BGA

Objetivo: Describir las prácticas cotidianas emprendidas por docentes y estudiantes con discapacidad visual de la Universidad Santo Tomás de Bucaramanga, que facilitan y obstaculizan la educación inclusiva, en tiempos de pandemia SARV-Cov2. Metodología: estudio cualitativo con enfoque descriptivo. Se realizaron entrevistas semi-estructuradas a dos docentes y dos estudiantes con discapacidad visual (baja visión) pertenecientes a la Universidad Santo Tomás de Bucaramanga. Se realizó un análisis descriptivo identificando patrones, regularidades o temas emergentes. Para el proceso de análisis, se utilizó el diseño metodológico desde Taylor y Bogdan. Resultados: De acuerdo con el análisis realizado, emergen cuatro categorías claramente identificables: prácticas metodológicas positivas para la enseñanza en tiempos de Covid-19. Esto se puede identificar y explicar debido a la necesidad urgente de pese a la pandemia, continuar con las acciones académicas previstas. Prácticas positivas para el aprendizaje diseñadas por estudiantes con discapacidad visual. Estas fueron naciendo en la medida que cada estudiante fue descubriendo cómo resolver retos presentados en los momentos de recibir sus clases mediadas por la tecnología. Redes de apoyo cercanas que contribuyen en el proceso de adaptabilidad a la nueva realidad. Sin duda las amistades y la familia se convierten para las personas con discapacidad en un eje fundamental de apoyo, que contribuye en su desarrollo individual. Conclusiones: Los hallazgos permiten reconocer las barreras y facilitadores que identifican las personas con discapacidad visual que están en el marco de un proceso de enseñanza y aprendizaje en el ámbito universitario. Aún persisten brechas que impiden la garantía de acceso a información, plataformas digitales entre otros elementos para las personas con discapacidad visual.Objective: To describe the daily practices undertaken by teachers and students belonging to the Faculty of Optometry with visual disabilities of the Santo Tomás de Bucaramanga University, which facilitate and hinder inclusive education, in times of the SARV-Cov2 pandemic. Methodology: qualitative study with a descriptive approach. Semi-structured interviews were conducted with two teachers and two students with visual disabilities (low vision) belonging to the Universidad Santo Tomás de Bucaramanga. A descriptive analysis was performed, identifying patterns, regularly or emerging themes. For the analysis process, the methodological design of Taylor and Bogdan was obtained. Results: According to the analysis carried out, three clearly identifiable categories emerge: positive methodological practices for teaching in times of Covid-19. This can be identified and explained due to the urgent need to weigh the pandemic, continue with the academic actions that are planned. Positive practices for learning designed for students with visual impairments. These were born as each student was discovering how to solve the challenges presented at the time of receiving their classes mediated by technology. Close support networks that contribute to the process of adaptability to the new reality. Undoubtedly, friendships and family are defined for people with disabilities in a fundamental axis of support, which contribute to their individual development. Conclusions: The results are a sample of the barriers and facilitators identified by people with visual disabilities who are in the framework of a university teaching and learning process. There are still gaps that prevent the guarantee of access to information, digital platforms, among other elements, for people with visual disabilities

New insights into the genetic etiology of Alzheimer's disease and related dementias

Characterization of the genetic landscape of Alzheimer's disease (AD) and related dementias (ADD) provides a unique opportunity for a better understanding of the associated pathophysiological processes. We performed a two-stage genome-wide association study totaling 111,326 clinically diagnosed/'proxy' AD cases and 677,663 controls. We found 75 risk loci, of which 42 were new at the time of analysis. Pathway enrichment analyses confirmed the involvement of amyloid/tau pathways and highlighted microglia implication. Gene prioritization in the new loci identified 31 genes that were suggestive of new genetically associated processes, including the tumor necrosis factor alpha pathway through the linear ubiquitin chain assembly complex. We also built a new genetic risk score associated with the risk of future AD/dementia or progression from mild cognitive impairment to AD/dementia. The improvement in prediction led to a 1.6- to 1.9-fold increase in AD risk from the lowest to the highest decile, in addition to effects of age and the APOE ε4 allele

Common variants in Alzheimer's disease and risk stratification by polygenic risk scores.

Funder: Funder: Fundación bancaria ‘La Caixa’ Number: LCF/PR/PR16/51110003 Funder: Grifols SA Number: LCF/PR/PR16/51110003 Funder: European Union/EFPIA Innovative Medicines Initiative Joint Number: 115975 Funder: JPco-fuND FP-829-029 Number: 733051061Genetic discoveries of Alzheimer's disease are the drivers of our understanding, and together with polygenetic risk stratification can contribute towards planning of feasible and efficient preventive and curative clinical trials. We first perform a large genetic association study by merging all available case-control datasets and by-proxy study results (discovery n = 409,435 and validation size n = 58,190). Here, we add six variants associated with Alzheimer's disease risk (near APP, CHRNE, PRKD3/NDUFAF7, PLCG2 and two exonic variants in the SHARPIN gene). Assessment of the polygenic risk score and stratifying by APOE reveal a 4 to 5.5 years difference in median age at onset of Alzheimer's disease patients in APOE ɛ4 carriers. Because of this study, the underlying mechanisms of APP can be studied to refine the amyloid cascade and the polygenic risk score provides a tool to select individuals at high risk of Alzheimer's disease

Multiancestry analysis of the HLA locus in Alzheimer’s and Parkinson’s diseases uncovers a shared adaptive immune response mediated by HLA-DRB1*04 subtypes

Across multiancestry groups, we analyzed Human Leukocyte Antigen (HLA) associations in over 176,000 individuals with Parkinson’s disease (PD) and Alzheimer’s disease (AD) versus controls. We demonstrate that the two diseases share the same protective association at the HLA locus. HLA-specific fine-mapping showed that hierarchical protective effects of HLA-DRB1*04 subtypes best accounted for the association, strongest with HLA-DRB1*04:04 and HLA-DRB1*04:07, and intermediary with HLA-DRB1*04:01 and HLA-DRB1*04:03. The same signal was associated with decreased neurofibrillary tangles in postmortem brains and was associated with reduced tau levels in cerebrospinal fluid and to a lower extent with increased Aβ42. Protective HLA-DRB1*04 subtypes strongly bound the aggregation-prone tau PHF6 sequence, however only when acetylated at a lysine (K311), a common posttranslational modification central to tau aggregation. An HLA-DRB1*04-mediated adaptive immune response decreases PD and AD risks, potentially by acting against tau, offering the possibility of therapeutic avenues

Prevalence, associated factors and outcomes of pressure injuries in adult intensive care unit patients: the DecubICUs study

Funder: European Society of Intensive Care Medicine; doi: http://dx.doi.org/10.13039/501100013347Funder: Flemish Society for Critical Care NursesAbstract: Purpose: Intensive care unit (ICU) patients are particularly susceptible to developing pressure injuries. Epidemiologic data is however unavailable. We aimed to provide an international picture of the extent of pressure injuries and factors associated with ICU-acquired pressure injuries in adult ICU patients. Methods: International 1-day point-prevalence study; follow-up for outcome assessment until hospital discharge (maximum 12 weeks). Factors associated with ICU-acquired pressure injury and hospital mortality were assessed by generalised linear mixed-effects regression analysis. Results: Data from 13,254 patients in 1117 ICUs (90 countries) revealed 6747 pressure injuries; 3997 (59.2%) were ICU-acquired. Overall prevalence was 26.6% (95% confidence interval [CI] 25.9–27.3). ICU-acquired prevalence was 16.2% (95% CI 15.6–16.8). Sacrum (37%) and heels (19.5%) were most affected. Factors independently associated with ICU-acquired pressure injuries were older age, male sex, being underweight, emergency surgery, higher Simplified Acute Physiology Score II, Braden score 3 days, comorbidities (chronic obstructive pulmonary disease, immunodeficiency), organ support (renal replacement, mechanical ventilation on ICU admission), and being in a low or lower-middle income-economy. Gradually increasing associations with mortality were identified for increasing severity of pressure injury: stage I (odds ratio [OR] 1.5; 95% CI 1.2–1.8), stage II (OR 1.6; 95% CI 1.4–1.9), and stage III or worse (OR 2.8; 95% CI 2.3–3.3). Conclusion: Pressure injuries are common in adult ICU patients. ICU-acquired pressure injuries are associated with mainly intrinsic factors and mortality. Optimal care standards, increased awareness, appropriate resource allocation, and further research into optimal prevention are pivotal to tackle this important patient safety threat

Correction to: Prevalence, associated factors and outcomes of pressure injuries in adult intensive care unit patients: the DecubICUs study

The original version of this article unfortunately contained a mistake

Prevalence, associated factors and outcomes of pressure injuries in adult intensive care unit patients: the DecubICUs study

Funder: European Society of Intensive Care Medicine; doi: http://dx.doi.org/10.13039/501100013347Funder: Flemish Society for Critical Care NursesAbstract: Purpose: Intensive care unit (ICU) patients are particularly susceptible to developing pressure injuries. Epidemiologic data is however unavailable. We aimed to provide an international picture of the extent of pressure injuries and factors associated with ICU-acquired pressure injuries in adult ICU patients. Methods: International 1-day point-prevalence study; follow-up for outcome assessment until hospital discharge (maximum 12 weeks). Factors associated with ICU-acquired pressure injury and hospital mortality were assessed by generalised linear mixed-effects regression analysis. Results: Data from 13,254 patients in 1117 ICUs (90 countries) revealed 6747 pressure injuries; 3997 (59.2%) were ICU-acquired. Overall prevalence was 26.6% (95% confidence interval [CI] 25.9–27.3). ICU-acquired prevalence was 16.2% (95% CI 15.6–16.8). Sacrum (37%) and heels (19.5%) were most affected. Factors independently associated with ICU-acquired pressure injuries were older age, male sex, being underweight, emergency surgery, higher Simplified Acute Physiology Score II, Braden score 3 days, comorbidities (chronic obstructive pulmonary disease, immunodeficiency), organ support (renal replacement, mechanical ventilation on ICU admission), and being in a low or lower-middle income-economy. Gradually increasing associations with mortality were identified for increasing severity of pressure injury: stage I (odds ratio [OR] 1.5; 95% CI 1.2–1.8), stage II (OR 1.6; 95% CI 1.4–1.9), and stage III or worse (OR 2.8; 95% CI 2.3–3.3). Conclusion: Pressure injuries are common in adult ICU patients. ICU-acquired pressure injuries are associated with mainly intrinsic factors and mortality. Optimal care standards, increased awareness, appropriate resource allocation, and further research into optimal prevention are pivotal to tackle this important patient safety threat

Barreras y facilitadores de inclusión social: una perspectiva desde las experiencias de personas con discapacidad visual

Objective: To understand the daily experiences that visually impaired people have, the barriers or facilitators for their social inclusion. Methods: Qualitative exploratory study. Semi-structured telephone interviews were conducted, given the status of pandemic by covid-19, to people with low vision and blindness from Bogota, Arauca, Bucaramanga and Piedecuesta. For the analysis process, methodological design was used from Taylor and Bogdan. Results: A central category emerges: Inclusion we all do: Visibilize diversity and capabilities in the scenarios of everyday life. The inclusion has been crossed by a constant struggle that they have had to assume in the different spaces where they develop their daily life; two critical scenarios are identified: educational and labour, as they are those in which people have faced a greater number of prejudices, stereotypes and fears.  For their part, art and sport are spaces that have allowed them to break with the negative imaginaries of impossibility and on the other hand strengthen their self-concept. Conclusion: The findings show that limiting glances still persist that coexist simultaneously, which has made it difficult to overcome schemes linked to a history of charity and charity, affecting the social inclusion of people with visual impairment.Objetivo: Comprender las experiencias cotidianas que tienen las personas con discapacidad visual, las barreras o facilitadores para su inclusión social. Métodos: Estudio cualitativo exploratorio. Se realizaron entrevistas semi-estructuradas vía telefónica, dada la condición de pandemia por la covid-19, a personas con baja visión y ceguera de Bogotá, Arauca, Bucaramanga y Piedecuesta. Para el proceso de análisis, se utilizó el diseño metodológico desde Taylor y Bogdan. Resultados: Emerge una categoría central: La inclusión la hacemos todos:  Visibilizar la diversidad y las capacidades en los escenarios de la vida cotidiana. La inclusión ha estado atravesada por una lucha constante que han tenido que asumir en los diferentes espacios donde desarrollan su cotidianidad; se identifican dos escenarios críticos:  el educativo y el laboral, pues son aquellos en los cuales las personas se han visto enfrentadas a un mayor número de prejuicios, estereotipos y temores.  Por su parte el arte y el deporte son espacios que les han permitido romper con los imaginarios negativos de imposibilidad y por otro afianzar su autoconcepto Conclusión: Los hallazgos dan cuenta de que aún persisten miradas limitantes que conviven simultáneamente, lo cual ha dificultado la superación de esquemas ligados a una historia de beneficencia y caridad, afectando la inclusión social de las personas con discapacidad visual