Experiencias de personas adultas con discapacidad intelectual sobre el derecho a la vida independiente: Un estudio de caso / Experiences of adults with intellectual disabilities on the right to independent living: A case study

Resumen En el ámbito de la discapacidad intelectual, el desarrollo de una vida independiente se ha configurado como un derecho humano y civil que permite a estas personas articular planes de vida deseados. Esta investigación analiza, mediante un estudio de caso, los significados que un grupo asesor compuesto por ocho personas adultas con discapacidad intelectual tiene sobre el concepto de vida independiente en el contexto chileno. Para la recopilación de los datos se diseñó una entrevista grupal semiestructurada acompañada de moodboards que facilitaron la verbalización de las respuestas. Sobre los relatos obtenidos a partir de las entrevistas se realizó un análisis de contenido temático. Los resultados muestran cómo el desempeño de una actividad laboral remunerada o el establecimiento de relaciones afectivas sólidas se conforman como elementos imprescindibles para la independencia personal. La dificultad para ser económicamente independientes o la falta de accesibilidad en el entorno laboral se identifican también como principales barreras para la concreción de este derecho. Igualmente, se destaca el rol que desempeñan la pareja y las amistades como figuras de apoyo constante a la independencia y al empoderamiento personal. Estos resultados sugieren algunas orientaciones para la planificación de intervenciones sobre este constructo, las cuales deben procurar la adquisición de habilidades que fortalezcan la capacidad de autocuidado de este colectivo, promover el incremento de oportunidades para la realización de elecciones significativas en el ámbito laboral, personal y comunitario, y adaptarse a los espacios en los que se desenvuelven las personas con discapacidad intelectual en la edad adulta.

Abstract In the field of intellectual disability, the development of an independent life has been configured as a human and civil right that allows these people to articulate desired life plans. Despite the advances, at the international level, research on aspects related to independent living in people with intellectual disabilities continues to be very scarce. Generally, the approaches to the study of this construct are based on broader investigations dedicated to evaluating the levels of quality of life or self-determination of this population in residential services or sheltered housing. Precisely, this study analyzes, through a case study, the meanings that an advisory group made up of eight adults with intellectual disabilities has on the concept of independent living in the Chilean context in order, on the one hand, to identify relevant elements for the definition of the construct from the perceptions and experiences of this population; and on the other, to propose guidelines at various levels that allow progress in the realization of this right. To collect the data, a semi-structured group interview was designed whose questions were grouped around four themes: previous conceptions of the participants about the construct of independent life, satisfaction with life and possibilities of the context for the development of personal independence, role of family, friendship and partner in independent life, and opportunities of the work context for the achievement of personal independence. During the interview, another strategy was incorporated in which visual language gained more relevance. Specifically, a set of ten moodboards were used that allowed participants to delve into the different topics addressed. The results of the code validation process were calculated using Krippendorff's alpha statistics (.954) and Cohen's kappa (.953), which showed a high level of inter-judge agreement. As a result of this process, categories (N = 6) and subcategories (N = 17) were established. The results show how various needs, barriers and facilitators for the development of independent life are identified from the interviews of the interviewees. Among the main needs is the performance of a paid work activity or the establishment of solid affective relationships. With regard to the barriers that hinder personal independence, the most notorious are related to the difficulty of being financially independent or to the lack of accessibility in the work environment. Regarding the elements that facilitate the development of an independent life, the role of the couple stands out as a constant figure of support for independence and personal empowerment. These results suggest some guidelines for planning interventions on this construct. Among others, they should seek the acquisition of skills that strengthen the self-care capacity of this group; should promote increased opportunities for making meaningful choices in the workplace, personal and community; and they must adapt to the spaces in which people with intellectual disabilities operate in adulthood. On the other hand, it is assumed that one of the main limitations of this research is that the results are not generalizable. However, this study has some strengths. Among others, it contributes to enriching the bulk of research on independent living, this being an aspect barely addressed in the literature. It also complements the results of other research regarding the elements that can condition the development of skills for personal independence. This allows for the design of interventions that provide opportunities for independent living based on the felt needs of these people. In addition, it raises future lines of research related, for example, to the importance of the informed choice of the residential environment or to the study of the possibilities of the digital world as an incident phenomenon in the acquisition of skills for personal independence.

Pressupostos epistemológicos das cidades amigas das pessoas idosas: revisão de escopo / Presupuestos epistemológicos de las ciudades amigables con las personas mayores: revisión de alcance / Epistemological assumptions of age-friendly cities: a scoping review

Resumo Objetivo Identificar os conceitos e perspectivas teóricas que fundamentam os estudos sobre Cidade Amiga da Pessoa Idosa. Métodos Revisão de escopo utilizando seis bancos de dados para identificar estudos publicados em revistas indexadas entre 2007 e 2021 usando as palavras-chave 'age-friendly' OR 'age friendly' OR 'cidade amiga'. Resultados Foram encontrados 2.975 estudos que após aplicação de critérios de exclusão resultaram em 227. Observou-se ampla variação no conceito do termo, porém muitos autores o fizeram replicando a OMS, sendo que em 59,5% dos estudos não houve menção de nenhuma perspectiva teórica. A teoria ecológica foi o referencial mais frequente (26%), sendo o termo usado como um equivalente a envelhecimento ativo. Autores de quatro países respondem pela maioria dos artigos (61%). Conclusão É necessário articular o conceito de Cidade Amiga da Pessoa Idosa com uma abordagem teórica e cultural para compreender mais profundamente as perspectivas do urbano e do social sob a lógica do envelhecimento populacional principalmente para a América Latina. A análise teórica nestes estudos e na gerontologia favorecerão discussões mais críticas sobre o envelhecimento, o idadismo e a crescente desigualdade social em curso.

Resumen Objetivo Identificar los conceptos y perspectivas teóricas que fundamentan los estudios sobre Cuidades Amigables con las Personas Mayores. Métodos Revisión de alcance utilizando seis bancos de datos para identificar estudios publicados en revistas indexadas entre 2007 y 2021, con las palabras clave 'age-friendly' OR 'age friendly' OR 'ciudad amigable'. Resultados Se encontraron 2975 estudios que, luego de aplicar los criterios de exclusión, quedaron 227. Se observó una amplia variación del concepto del término, aunque muchos autores replicaron a la OMS. En el 59,5 % de los estudios no se mencionó ninguna perspectiva teórica. La teoría ecológica fue la referencia más frecuente (26 %), y el término se usó como un equivalente al envejecimiento activo. La mayoría de los artículos (61 %) son de autores de cuatro países. Conclusión Es necesario unir el concepto de Cuidades Amigables con las Personas Mayores con un enfoque teórico y cultural para comprender más profundamente las perspectivas de lo urbano y lo social de acuerdo con la lógica del envejecimiento poblacional, principalmente en América Latina. El análisis teórico en estos estudios y en la gerontología permitirán discusiones más críticas sobre el envejecimiento, el edadismo y la creciente desigualdad social en curso.

Abstract Objective To identify the concepts and theoretical perspectives that underlie studies on age-friendly city. Methods This is a scoping review using six databases to identify studies published in indexed journals between 2007 and 2021 using the keywords 'age-friendly' OR 'age friendly' OR 'cidade amiga'. Results A total of 2,975 studies were found, which, after applying the exclusion criteria, resulted in 227. There was wide variation in the concept of the term, but many authors did so by replicating the WHO, and in 59.5% of studies there was no mention of any theoretical perspective. The ecological theory was the most frequent reference (26%), the term being used as an equivalent to active aging. Authors from four countries account for most articles (61%). Conclusion It is necessary to articulate the concept of age-friendly city with a theoretical and cultural approach to understand more deeply the urban and social perspectives under the logic of population aging, mainly for Latin America. Theoretical analysis in these studies and in gerontology will favor more critical discussions about aging, ageism and the growing social inequality in progress.

Los años dorados en la actualidad: Un estudio de caso / The golden years today: A case study

La investigación tuvo por objetivo identificar, analizar y sistematizar las experiencias teóricas con respecto al estudio de casos como metodología investigativa. El objetivo primario fue evidenciar el estigma y el estereotipo sobre los adultos mayores contrastado con la realidad actual. Para esto se realizó una serie de estudios de casos a adultos mayores de manera remota y presencial debido a la reciente pandemia de COVID-19 donde fueron seleccionados los más destacados. Los resultados obtenidos fueron utilizados para comparar con la estigmatización social atribuida a este grupo etario. Se considera que mediante la entrega de herramientas necesarias para el desarrollo social a las personas mayores para que logren manejar su salud y su estilo de vida, un adulto mayor puede ser capaz de gestionar su autonomía e incluirse en la sociedad de forma eficaz y placentera[AU]

The objective of the research w as to identify, analyze and systematize the theoretical experiences regarding the case study as a research methodology. The primary objective was to demonstrate the stigma and stereotype about the elderly over reality. For this, a series of case studies were carried out on elderly people remotely and in person due to the recent COVID-19 pandemic, where the most prominent were selected. The results obtained were used to contrast the social stigmatization attributed to this age group. We believe that by providing the necessary tools for social development to older people so that they can manage their health and lifestyle, an older adult may be able to manage their autonomy and include themselves in society in an effective and pleasant way[AU]

A pesquisa teve como objetivo identificar, analisar e sistematizar as experiências teóricas sobre o estudo de caso como metodologia de pesquisa. O objetivo principal foi destacar o estigma e estereótipo sobre os idosos sobre a realidade. Para isso, foi realizada uma série de estudos de caso em idosos de forma remota e presencial devido à recente pandemia de COVID-19, onde foram selecionados os mais destacados. Os resultados obtidos foram utilizados para contrastar com a estigmatização social atribuída a essa faixa etária. Em conclusão, propomos que, ao fornecer as ferramentas necessárias para o desenvolvimento social dos idosos, para que eles possam gerenciar sua saúde e estilo de vida, o idoso poderá gerenciar sua autonomia e se incluir na sociedade de maneira eficaz e agradável[AU]

Efectos de un programa de telerehabilitación sobre la funcionalidad en personas mayores / Effects of a telerehabilitation program on functionality in the older people

Resumen: Objetivo: Determinar los efectos de un programa de telerehabilitación (TR) en el nivel de independencia funcional y el número de caídas en personas mayores, asistentes a un centro de cuidados diurno. Materiales y método: 14 personas mayores ( χ =74 años), sometidas a un programa de kinesiterapia/fisioterapia/ terapia física (TF) a través de tele rehabilitación por un período de 12 semanas. El grupo control recibió intervención educativa a través de un cuadernillo de actividad física que debieron desarrollar de forma autónoma, con supervisión telefónica semanal; mientras que el grupo experimental recibió 15 sesiones de kinesiterapia/fisioterapia/terapia física por video llamada mediante aplicación WhatsApp TM . Ambos grupos fueron evaluados pre y post intervención con escala índice de Barthel (IB) y el número de caídas, mediante el cuestionario de la valoración geriátrica integral (VGI). Resultados: El grupo experimental aumentó el puntaje del índice de Barthel (↑3.6), mientras que el grupo control disminuyó este puntaje (↓6.9). Ambos grupos disminuyen el número de caídas, sin encontrar diferencias entre grupos. Al comparar ambos grupos, las personas mayores sometidas a un programa de kinesiterapia/fisioterapia/ terapia física a través de tele rehabilitación presentaron mejoras significativamente mayores en el índice de Barthel que el grupo control (p<0.05). Conclusión: Las personas mayores que participaron en un programa kinesiterapia/ fisioterapia/ terapia física a través de tele rehabilitación presentaron un mayor nivel de independencia funcional que las personas con la intervención con cuadernillo de actividad física guiado por llamada telefónica, lo que sugiere considerar a los programas de terapia física como una alternativa terapéutica para mejorar el nivel de independencia en personas mayores.

Abstract: Objective: To determine the effects of a telerehabilitation (TR) program on the level of functional independence and the number of falls in older people attending a day care center. Materials and method: 14 older people ( χ = 74 years), submitted to a kinesitherapy / physiotherapy / physical therapy (PT) program through telerehabilitation for a period of 12 weeks. The control group received educational intervention through a physical activity booklet which they had to develop independently, with weekly telephone supervision, while the experimental group received 15 kinesitherapy / physiotherapy / physical therapy sessions via video calls through WhatsApp TM application. Both groups were evaluated pre and post intervention with the Barthel index scale (BI) and the number of falls using the comprehensive geriatric assessment (CGA). Results: The experimental group increased the Barthel index scale score (↑3,6) while the control group decreased this score (↓6,9). Both groups decreased the number of falls, without differences between groups. When comparing both groups, the elderly who underwent a kinesitherapy / physiotherapy / physical therapy program through telerehabilitation showed significantly greater improvements in Barthel index scale than the control group (p <0.05). Conclusion: Older people who participated in a kinesitherapy / physiotherapy / physical therapy program through telerehabilitation presented a higher level of functional independence compared to participants in the intervention with a phone call-guided physical activity booklet, which suggests a telerehabilitation programs as an alternative therapeutics to improve the level of independence in older people.

Leisure-time physical activity as a protective factor for functional capacity loss in community dwelling elders

ABSTRACT Populational aging led to the emergence of chronic diseases, all potentially incapacitating, thus affecting functional capacity (FC) of elders. Despite health evidences in favour of having regular physical activity, the majority of elders are not sufficiently active. Baseline data of an urban elder cohort in Brazil showed that only 28% were active and 68% had some functional loss, a figure that went up to 73% among the inactives. FC was associated with a network of sociodemographic, health and behavioral factors. In a multivariate analysis, the inactives showed twice the odds of being severely dependent when compared to the actives. Noteworthy that inactivity is as a modifiable factor that might prevent FC loss. Longitudinal studies are needed to verify.

RESUMO O envelhecimento populacional gera o surgimento de doenças crônicas, todas potencialmente incapacitantes, afetando a capacidade funcional (CF) dos idosos. Apesar das evidências de saúde em favor da atividade física regular, a maioria dos idosos não é suficientemente ativa. Dados da linha de base de uma coorte de idosos no Brasil mostraram que 28% eram ativos e 68% tiveram alguma perda funcional, número que subiu para 73% entre os inativos. A CF se associou a uma rede de fatores sociodemográficos, de saúde e comportamentais. Na análise multivariada, os inativos mostraram duas vezes mais chances de serem dependentes graves quando comparados aos ativos. Destaca-se a inatividade como um fator modificável que pode prevenir a perda da CF. Estudos longitudinais são necessários para verificar a causalidade.

RESUMEN El envejecimiento poblacional causa aparición de enfermedades crónicas, potencialmente incapacitantes, afectando la capacidad funcional (CF) del anciano. A pesar de evidencias se salud a favor de la actividad física regular, la mayoría de los ancianos no son suficientemente activos. Una cohorte de ancianos brasileños mostró que 28% estaban activos y 68% tenían alguna pérdida funcional, cifra que subió al 73% entre los inactivos. La CF se ha asociado con una red de factores sociodemográficos, de salud y comportamiento. En análisis multivariante, los inactivos tenían el doble de probabilidades de ser dependientes severos comparándolos con los activos. La inactividad se destaca como un factor modificable que puede prevenir la pérdida de CF. Se necesitan estudios longitudinales para verificar la causalidad.

Ativismo e deficiência: um estudo sobre os repertórios que dão sentido à vida independente / Activismo y deficiencia: un estudio sobre los repertorios que dan sentido a la vida independiente / Activism and disability: a study on the meanings of independent living

Neste trabalho, buscou-se identificar os repertórios usados por ativistas do Movimento de Vida Independente para dar sentido à noção de vida independente. Para isso, foram analisados documentos de domínio público produzidos por esses ativistas, tais como livros, sítios de internet, livretos, material publicitário, jornais institucionais, etc., bem como foram realizados grupos focais com alguns de seus membros. Essa análise permitiu constatar que os principais repertórios usados para dar sentido a essa noção são: independência, autonomia, empoderamento, autodeterminação, participação e igualdade de oportunidade. Permitiu, também, concluir que vida independente é entendida como práxis, ou seja, não há filosofia sem a prática de vida independente e vice-versa. O uso desses repertórios indica que os ativistas buscam ser reconhecidos como atores sociais, participar ativamente da sociedade e assumir o controle de suas vidas.

The goal of this study was to identify the repertoires used by activists of the Independent Living Movement to convey the meaning of independent living. Documents of public domain produced by those activists, including books, websites, advertisement material and institutional papers, were reviewed, and two focal groups were created for analysis. The conclusion of the analysis identified the repertories used to convey the concept of independent living as independence, autonomy, empowerment, self-determination, participation and equal opportunity. Moreover, independent living was understood as praxis, in other words, as the process of transforming theoretical knowledge into practice. The use of those repertories indicates that the activists seek recognition as social actors, that is, they wish to be actively involved in society and control their own lives.

En este trabajo, se ha tratado de identificar los repertorios que los activistas del Movimiento de Vida Independiente utilizan para dar sentido a la noción de vida independiente. Para eso, fueron analizados documentos de dominio público producidos por estos activistas, tales como libros, sitios de Internet, folletos, anuncios, periódicos institucionales etc., así como fueron realizados dos grupos focales con algunos de sus miembros. Este análisis ha permitido constatar que los principales repertorios utilizados para dar sentido a esta noción son: independencia, autonomía, empoderamiento, autodeterminación, participación e igualdad de oportunidades. Ha permitido, también, concluir que la vida independiente es entendida como praxis, o sea, no hay filosofía sin la práctica de la vida independiente y viceversa. El uso de estos repertorios indica que los activistas tratan de ser reconocidos como actores sociales, participar activamente en la sociedad y tomar el control de sus vidas.

A best practice in education and support services for independent living of intellectually disabled youth and adults in Mexico: [review]

This article describes a best practice in the field of intellectual disability, a program for independent living offered by the Center for Integral Training and Development (CADI per its abbreviation in Spanish) for people with intellectual disability in Mexico. A detailed description of an effective program that fosters autonomy, social inclusion and high quality of life in people with intellectual disability is presented. The program encompasses four areas: a) a therapeutic academic area that teaches applied living skills; b) development of social skills; c) development of vocational skills, and d) skills for independent living. The program is divided into three levels: a) initiation to independent living, where clients develop basic abilities for autonomy, b) community integration and social independence, which provides clients with the skills necessary for social inclusion and economic independence, and c) practical and psychological support, which offers counseling for resolving psychological issues and enables subjects to maintain their autonomy.

Este artículo describe una "mejor práctica" en la capacitación para el logro de vida independiente, inclusión social y alta calidad de vida en personas con discapacidad intelectual. Se describe en detalle del programa ofrecido por el Centro de Capacitación y Desarrollo Integral (CADI), en México. Dicho programa tiene cuatro áreas: 1) área académico-terapéutica para el desarrollo de destrezas prácticas para la vida independiente; 2) área para el desarrollo personal y de habilidades sociales; 3) área para el desarrollo de habilidades laborales; y 4) área para el desarrollo de habilidades aplicadas a la vida independiente. El programa se divide en tres niveles: a) iniciación a la vida independiente, donde se desarrollan las habilidades básicas necesarias para el logro de su autonomía; b) integración comunitaria e independencia social que provee a los clientes las destrezas necesarias para su inclusión social e independencia económica; c) apoyo práctico y psicológico que ofrece asesoría para resolver problemas psicológicos y el logro de su autonomía.