Aspectos legales y bioéticos de intervenciones e investigaciones en personas con discapacidad intelectual en Chile / Aspectos legais e bioéticos de intervenções e pesquisas em pessoas com descapacidade intelectual no Chile / Legal and bioethical issues of interventions and research in persons with intellectual disability in Chile

El trabajo presenta una revisión y discusión de los aspectos legales y éticos que protegen a los sujetos con discapacidad intelectual en la participación de investigaciones o intervenciones terapéuticas en Chile, además de reflexionar sobre situaciones de diagnóstico y tratamiento que generan conflicto respecto de los derechos de las personas con discapacidad intelectual. Los temas específicos se vinculan con la decisión autónoma y capacidad en el consentimiento informado, los derechos de las personas con discapacidad intelectual, la evaluación de la capacidad y la reflexión sobre algunos dilemas bioéticos en el tratamiento y evaluación de la discapacidad intelectual. Se propone reconocer el derecho de las personas con discapacidad intelectual a decidir por sí mismos y ser reconocidos en igualdad de oportunidades y derechos, desarrollar procedimientos y protocolos para la evaluación de la capacidad estandarizados y adaptados a la diversidad cultural del país, y que cuidadores, familiares y profesionales consideren no solo las normativas frente a la investigación y tratamiento, sino también la opinión y decisión de las personas con discapacidad, e informarles en qué consisten dichas experiencias, considerando sus características individuales.

This article presents a review and discussion of ethical and legal issues which protect subjects with intellectual disability in their participation in research or therapeutic interventions in Chile, moreover reflecting on situations of diagnosis and treatment which generate conflict with respect to the rights of persons with intellectual disability. The specific topics are linked to autonomous decision and capacity in informed consent, the rights of persons with intellectual disability, the evaluation of capacity and the reflection on some bioethical dilemmas in the treatment and evaluation of intellectual disability. The following is proposed: to recognize the rights of persons with intellectual disability to decide by themselves and the recognition of equal rights and opportunities to develop procedures and protocols standardized and adapted for cultural diversity in the country for evaluating capacity. Furthermore, caretakers, family members and professionals should consider not only regulations for research and treatment, but also the opinion and decision of persons with disabilities and inform them about such experiences considering their individual characteristics.

O trabalho apresenta uma revisão e discussão dos aspectos legais e éticos que protegem os sujeitos com descapacidade intelectual na participação deinvestigações ou intervenções terapêuticas no Chile, além de refletir sobre situações de diagnóstico e tratamento que geram conflito a respeito dos direitos das pessoas com descapacidade intelectual. Os temas específicos se vinculam com a decisão autônoma e capacidade do consentimento informado, os direitos das pessoas com descapacidade intelectual, a avaliação da capacidade e a reflexão sobre alguns dilemas bioéticos no tratamento e avaliação da descapacidade intelectual. Propõe-se reconhecer o direito das pessoas com descapacidade intelectual para decidir por si mesmas e ser reconhecidas em igualdade de oportunidades e direitos, desenvolver procedimentos e protocolos padrões para a avaliação da capacidade e adaptados à diversidade cultural do país, e que cuidadores, familiares e profissionais considerem não só as normativas frente à investigação e tratamento, mas também a opinião e decisão das pessoas com descapacidade, e informar-lhes em que consistem as ditas experiências, considerando suas características individuais.

Calidad de vida profesional de trabajadoras de una escuela de estudiantes con discapacidades múltiples / Professional quality of life of women workers in a school for students with multiple disabilities

El propósito del siguiente estudio consistió en explorar la salud física, mental y calidad de vida en el trabajo de profesoras, profesionales y asistentes de educación que atienden a escolares con discapacidades múltiples. A través de un método cualitativo de estudio de caso, se entrevistaron a 15 trabajadoras de una escuela especial para niños con discapacidades múltiples. También se aplicó el Cuestionario de Salud General abreviado (GHQ-12), el Inventario de Burnout de Maslach (MBI) y el Cuestionario de Calidad de Vida Profesional (CVP-35). Los resultados de los cuestionarios indicaron que cerca de la mitad de las trabajadoras (40%) presentaron riesgo en su salud mental y cansancio emocional. Más de 90% poseía una baja despersonalización, alta realización personal y una buena calidad de vida global en el trabajo. Por otro lado, se percibe en las entrevistas cansancio físico, agresiones de parte de los escolares, lesiones musculares por fuerza mal realizada y sensación de existir una carga de trabajo mal distribuida que generan en las trabajadoras un malestar encubierto. El buen clima laboral y liderazgo participativo de parte de la dirección puede facilitar el desarrollo de una intervención efectiva que permita mejorar la calidad del trabajo y el estado de salud física de las trabajadoras.

The purpose of this study was to explore the physical and mental health, and quality of life among teachers, education professionals and paraprofessionals serving students with multiple disabilities. Using a qualitative case study-based approach, 15 women workers were interviewed in a school for children with multiple disabilities. In addition, they completed the short version of the General Health Questionnaire (GHQ- 12), the Maslach Burnout Inventory (MBI) and the Quality of Professional Life Questionnaire (CVP-35). Results indicated that about half of the workers (40%) presented an increased risk of poor mental health and emotional exhaustion. More than 90% had a low level of depersonalization, but high sense of personal accomplishment and a good overall quality of life at work. However, the interviews uncovered evidence of physical fatigue, aggression by pupils, musculoskeletal injury due to by sudden heavy lifting and sensation of a poorly distributed workload that generates undisclosed discomfort in the workers. The presence of a good working environment and participative leadership from upper management could conceivably facilitate the development of an effective intervention to improve the quality of work and physical health of women workers.

Integración familiar de jóvenes con discapacidad intelectual moderada, pertenecientes a un hogar de menores / Reinstating youngsters with moderate mental disability from a group home for minors back to their families

El trabajo que se informa presenta una descripción y evaluación de un estudio de casos de reintegración familiar de tres jóvenes con discapacidad intelectual moderada pertenecientes a un hogar de menores, desarrollado durante tres años. La metodología utilizada estuvo centrada principalmente en el enfoque biográfico, con la técnica de relatos de vida. Además de presentar las características de sus familias, específicamente de sus madres, los resultados aportan antecedentes claves para poder potenciar el sistema de integración familiar actual que existe para la atención de niños, niñas y jóvenes con necesidades educativas especiales. De los tres casos, sólo uno concretó la reintegración familiar de la joven discapacitada, el segundo está en proceso de finalizar la integración y en el tercero, la madre desertó. Se observa que es compleja la integración en las familias de los menores que asisten a centros de protección. Como factores claves para el éxito de la intervención, se reconocen las redes de apoyo sociales y familiares, las estrategias individuales para revincularse con la hija y resignificar su discapacidad, el apoyo de la institución y el trabajo multidisciplinario. Finalmente se concluye a partir de estos casos, cuáles serían los aspectos esenciales que permiten realmente que los menores crezcan y vivan en familia como seres íntegros y plenos. Para ello se requiere contar con un plan de intervención y un seguimiento constante del proceso, en el que se trabaje no sólo con la madre o tutor principal del menor, sino que también se incorpore a toda la familia en el proceso.

The article presents a description and evaluation of a three year case study of three youngsters with moderate mental disability from a group home for minors. We used a biography approach, and a life story technique. Through this technique, the person articulates his or her past, present and future in an interview or an open interaction. Our goal was to understand and face the mothers' life experiences in order to create an intervention method based on their own reality and perspective. Apart from presenting the children's family characteristics, particularly that of their mothers, the results bring out key information that strengthen and promote the current system of family integration for children and youngsters with special educational needs. Out of the three cases, only one family achieved the reinstatement of their child with a disability; the second family is in the process of finishing the reinstatement, and in a third case, the mother abandoned the process. Based on these experiences, reinstating a child who was looked after by a child care and protection center back to his or her family, is a complex issue. The family plays a fundamental role in the process of bringing their child back into their homes, and is a key factor for a successful intervention. Families who have a support network, both at an individual and social level, have better possibilities of reinstating their child back into the family. Another important point to consider is individual strategies mothers use to renew the bond with their child, which are influenced by the stages they are going through regarding the adaptation process and acceptance of the disability. Other aspects that influence whether families abandon the reinstatement process or not are the type of disability, the cause of transfer to the care and protection center, the stage that each mother is going through regarding their child's disability linked to their vital cycle, the mothers' age and their constant denial in coping with disability and their maternal roles. The family reinstatement program is recognized as a good system which allows children with disabilities to achieve better growth and development with their families, while acknowledging at the same time, that adoption is practically nonexistent. This system requires constant interventions and follow-ups, not only with the tutor, but also including the whole family in the process. Moreover, multi-disciplinary work at home, in community institutions and in other social levels that bring support to the family's readjustment of their internal bonds and structure, should be considered key interventions. Strengthening parental figures helps parents change their perspective regarding their child's disability, and is crucial in accomplishing true social integration, as well as allowing children to grow and live in a family as wholesome and complete beings.