ABSTRACT
El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)
The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)
Subject(s)
Humans , Young Adult , Adult , Intellectual Disability , Quality of Life , Disabled Persons , Chile , Sampling StudiesABSTRACT
El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)
The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)
Subject(s)
Humans , Young Adult , Adult , Intellectual Disability , Quality of Life , Disabled Persons , Chile , Sampling StudiesABSTRACT
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.
ABSTRACT
Resumen La autodeterminación es un constructo clave para garantizar el desarrollo de habilidades que permitan a las personas con discapacidad intelectual adquirir el control sobre sus vidas. Este estudio busca conocer los niveles de autodeterminación de 516 adultos con discapacidad intelectual en proceso de envejecimiento y algunas variables que inciden en su desarrollo. Desde un enfoque cuantitativo, los datos se han recopilado con una escala ad hoc elaborada desde el modelo funcional de autodeterminación. Las evidencias se han analizado mediante estadísticos descriptivos e inferenciales. Los niveles de autodeterminación de la mayoría de los participantes se sitúan en un rango bajo. Los principales resultados muestran cómo el desarrollo de competencias relacionadas con la autodefensa o el autoconocimiento está muy descendido a diferencia de otras habilidades como la realización de elecciones o la resolución de problemas. Además, la severidad de la discapacidad, la edad, el lugar de residencia o el tipo de apoyo se identifican como factores incidentes en el logro de la autodeterminación. La discusión revela, entre otras, la necesidad de priorizar el aprendizaje de competencias relacionadas con la autorrealización como fundamento de las propuestas de intervención en autodeterminación. Este estudio contribuye a enriquecer el grueso de investigaciones sobre autodeterminación en la adultez tardía, siendo este un aspecto apenas abordado en la literatura. Además, complementa los resultados de otras investigaciones con respecto a los factores que pueden condicionar el desarrollo de estas habilidades. Esto permite ir diseñando intervenciones que propicien oportunidades para trabajar la autodeterminación desde las necesidades sentidas de estas personas.
Abstract Self-determination is a key construct to guarantee the development of skills that enable people with disabilities to acquire control over their lives. This concept is understood as a set of volitional actions or abilities that help the person to act as the primary causal agent in their own life without unnecessary external influences. Progressively, this construct has been shaped as a personal disposition to exercise control over one's own behavior, becoming a priority educational goal and an indicator of quality of life in the field of intellectual disability. However, people with intellectual disabilities have premature aging processes generally accompanied by mental health disorders or emotional problems that hinder the performance of self-determination skills. Specifically, they have difficulties in developing actions aimed at promoting positive attributions of effectiveness or aimed at establishing personal goals. This complicates the acquisition of skills for self-regulation and the increase of personal empowerment skills. This study seeks to know the self-determination levels of 516 aging adults with intellectual disabilities aged between 45 and 86 years (. = 68.32; S = 4.95). Most of them live in the Metropolitan Region (Chile), have severe intellectual disabilities, are men and live with the family. From a quantitative approach and under an inclusive research model, the data have been collected using an ad hoc scale as a result of the revision of the ARC-INICO Self-determination Assessment Scale (Verdugo et al., 2015) and the Self-determination Scale ARC staff (Wehmeyer, 1995). The results have been analyzed using descriptive and inferential statistics that have preceded the use of parametric statistics. The self-determination levels of the majority of the participants (39.1 %) are in a low range. In addition, the development of competencies related to self-defense or self-knowledge are greatly diminished, unlike other skills such as making choices or solving problems. Likewise, the analysis shows how those participants who reside in the family home present higher averages in their self-determination than those who live outside the family home. Similarly, participants with mental health disorders have lower averages in their self-determination than those who do not present these pathologies. Regarding the degree of disability, the levels of self-determination of the mild group are higher than those of the group of adults with severe intellectual disability. Those who most often have family support have higher levels of self-determination than those who receive only professional support. With regard to age, the youngest participants have higher averages than the rest in terms of their self-determination. The discussion highlights, among others, the need to prioritize the learning of skills related to self-realization as the basis of the proposals for intervention in self-determination at this stage of life. The results suggest some implications to consider for the planning of interventions, for example, they should seek the development of skills that strengthen the self-defense capacity of people with intellectual disabilities, promote the increase of opportunities for the realization of meaningful choices, adapt to the scenarios in which aging people with intellectual disabilities usually operate, and involve families and professionals to achieve skills related to self-determination in old age. Despite the fact that one of the main limitations of this research is that the results are not generalizable, this study contributes to enriching the bulk of research on self-determination in late adulthood, this being an aspect barely addressed in the literature. In addition, it suggests the development of future lines of research related to the impact of technological supports on the quality of life of people with intellectual disabilities who age or with the study of cognitive impairment or the presence of mental health disorders in the levels of self-determination of these people.
