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.

Mediating effects of self-perceptions of aging between frailty and cognitive function in community-dwelling older adults / 中华行为医学与脑科学杂志

Objective:To explore the mediating role of self-perceptions of aging between frailty and cognitive function in community-dwelling older adults.Methods:From February to July 2021, a total of 528 elderly people in Xinxiang community were investigated with the frailty phenotype, the brief self-perceptions ageing questionnaire and the Mini-mental state examination(MMSE) scale.According to the MMSE total score and education level, the subjects were divided into cognitive impairment group (illiteracy≤17, primary school≤20, junior high school and above≤24, n=74) and cognitive normal group( n=454). SPSS 25.0 software was used for common method deviation test, descriptive statistics and correlation analysis, while AMOS 24.0 software was used to build structural equation model and Bootstrap method was used for intermediary effect test. Results:(1)The prevalence of cognitive impairment among the elderly in the community was 14.1%. The differences between the cognitively normal group and cognitively impaired group were statistically significant in terms of age, education, number of chronic diseases suffered and depression ( χ2=59.21, 6.53, 9.84, 25.47, all P<0.05). The differences were statistically significant in terms of frailty( χ2=75.65, P<0.001) and self-perceptions of aging ( t=77.67, P<0.001). (2)Self-perceptions of aging in the cognitively impaired group (47.39±8.66) was higher than that in the cognitively normal group (38.22±8.24) ( t=77.67, P<0.001) .Frailty score in cognitively impaired group (2.00 (1.00, 3.00)) was higher than that in the cognitively normal group (0.00 (0.00, 1.00))( Z=-8.63, P<0.001) . (3)Frailty was negatively correlated with cognitive function ( r=-0.492, P<0.01), and positively correlated with self-perceptions of aging ( r=0.540, P<0.01). Self-perceptions of aging was negatively correlated with cognitive function ( r=-0.541, P<0.01) . After controlling the influencing factors such as age, education level, chronic diseases and depression, the correlation was still significant (all P<0.01) . (4) Self-perceptions of aging played a partially mediating role in the relationship between frailty and cognitive function, the mediating effect accounted for 58.5% of the total effect. Conclusion:Frailty and self-perceptions of aging have a significant impact on the cognitive function of the elderly in the community, and self-perceptions of aging plays a partial intermediary role between the frailty and cognitive function of the elderly in the community.

Relationship between self-perceptions of aging and cognitive function in community elderly: the mediating and moderating effects of loneliness / 中华行为医学与脑科学杂志

Objective:To explore the relationship between self-perceptions of aging and cognitive function, and the mediating and moderating effect of loneliness among them.Methods:A multi-stage stratified sampling was conducted in Jinzhou from September to November 2021, and 318 community-based elderly were included.General data questionnaire, the brief ageing perceptions questionnaire (BAPQ), UCLA loneliness scale(UCLA-LS) and mini-mental state examination (MMSE) were applied to all subjects.IBM SPSS 25.0 software was used to conduct independent sample t-test, analysis of variance and Pearson correlation analysis, and Bootstrap program of AMOS 22.0 was used to analyze the mediation effect.The model in SPSSAU on-line analysis program was used to test the moderating effect. Results:The average scores of self-perceptions of aging, loneliness and cognitive function were (44.85±12.48), (41.70±8.73) and (24.87±3.40) respectively.And 65 of 318 subjects had cognitive impairment, and the detection rate was 20.44%(65/318). Self-perceptions of aging, loneliness and cognitive function scores were significantly correlated between each other(all P<0.05). Self-perceptions of aging had a negative effect on cognitive function ( β=-0.467, P<0.01). Self-perceptions of aging had a positive effect on loneliness ( β=0.585, P<0.01). Loneliness had a negative effect on cognitive function ( β=-0.234, P<0.01). The indirect standardization effect of loneliness between self-perceptions of aging and cognitive function was -0.137, and the mediating effect accounted for 22.68% of the total effect.Loneliness played a moderating role between self-perceptions of aging and cognitive function ( β=-0.114, t=-2.26, P=0.025). Conclusion:Self-perceptions of aging and loneliness can predict the cognitive function in the elderly, and loneliness plays a mediating role between self-perceptions of aging and cognitive function.Early detection of negative senility emotion and loneliness of the elderly will play a positive role in preventing the occurrence of cognitive impairment.

Los posibles sí mismos en la adolescencia: diferencias en función del género / Possible selves in adolescence: Gender differences

Antecedentes: En la adolescencia, se han encontrado múltiples diferencias en la forma en que los varones y las mujeres se perciben a sí mismos. Esto lleva a preguntarse por la forma en que los y las adolescentes se perciben a sí mismos en el futuro, es decir, los posibles sí mismos (PSs) que pueden generar. Objetivo: Indagar las diferencias en función del sexo en los PSs de adolescentes de la Ciudad Autónoma de Buenos Aires (CABA). Método: Participaron adolescentes ( n = 392) de ambos sexos (mujeres = 54.9%) que asistían a escuelas secundarias de la CABA (edad M = 14.92; SD = 1.52). Los adolescentes respondieron un cuestionario de preguntas abiertas en el que se les pidió que realicen un listado de sus PSs cuando terminen el secundario. Se realizó un análisis de contenido temático de las respuestas y conteo de frecuencias. Se utilizaron pruebas de ji cuadrado y U de Mann-Whitney para estudiar las diferencias por sexo en el contenido, diversidad y balance en los PSs. Resultados: Las cuatro categorías más mencionadas de PSs por varones y mujeres fueron el estudio, el trabajo, la profesión, el estilo de vida, y la familia y seres queridos. Sin embargo, existen diferencias en la proporción en que varones y mujeres generaron PSs en varios dominios. Por otro lado, las mujeres presentan mayor diversidad de PSs esperados y deseados que los varones. No se encontraron diferencias en el balance en los PSs. Conclusiones: se observa una coincidencia en los dominios de los PSs mencionados por los varones y las mujeres. Sin embargo, las mujeres tienen una mirada más amplia de sí mismas en el futuro y el dominio de la familia y los seres queridos sigue siendo más prevalente para ellas.

Background: In adolescence, multiple differences have been found in the way boys and girls perceive themselves. This leads to wondering about the way in which adolescents perceive themselves in the future, that is, the possible selves (PSs) that they can generate. Objective: To investigate the differences according to sex in the PSs of adolescents of the Autonomous City of Buenos Aires (CABA). Method: The participants were adolescents ( n = 392) of both sexes (women = 54.9%) who attended secondary schools in the CABA ( M = 14.92, SD = 1.52). The adolescents completed an open-ended questionnaire in which they were asked to make a list of their PSs when they finish high school. A thematic content analysis of responses and a frequency count of categories were conducted. Chi-Square and Mann-Whitney U tests were used to study the differences in content, diversity and balance in the PSs according to sex. Results: The four categories of PSs most mentioned by boys and girls were study, work, profession, lifestyle, and family and loved ones. However, there were differences in the proportion in which males and females generated PSs in several domains. On the other hand, women had more diversity in the expected and desired PSs than men. No differences were found in the balance of the PSs. Conclusions: There is a correspondence between the domains of the PSs mentioned by boys and girls. However, women have a wider view of themselves in the future, and the domain of family and loved ones is still more prevalent in them.

A prática desportiva dos estudantes universitários e suas relações com as autopercepções físicas, bem-estar subjectivo e felicidade / University students' sport practice and its relations with physical self-perceptions, subjective well-being and happiness

A presente investigação analisou as relações entre a prática desportiva de estudantes universitários e o modo como estes se percepcionavam a si próprios e às suas vidas. Participaram nesta investigação 2284 estudantes de ambos os sexos, com idades entre os 18 e os 30 anos (M = 21,87 ±2,37), que preencheram um questionário sobre a sua prática desportiva, bem como versões portuguesas do Physical Self-Perception Profile (Fox & Corbin, 1989), da Subjective Happiness Scale (Lyubomirsky & Lepper, 1999), da Satisfaction With Life Scale (Diener, Emmons, Larsen, & Griffin, 1985) e da Positive and Negative Affect Schedule (Watson, Clark, & Tellegen, 1988). Em geral, a análise dos resultados revelou que os indivíduos que possuíam mais confiança física e que avaliavam a sua vida mais positivamente praticavam desporto mais regularmente; porém, verificou-se igualmente que quem se percebia menos forte fisicamente e tinha uma auto-estima mais baixa também praticava desporto mais regularmente do que os pares.

The purpose of this study was to examine the relationships between university students' sport practice and the way they perceived themselves and their lives. Participated in this investigation 2284 male and female students, with ages between 18 and 30 years (M = 21.87 ±2.37), who filled out a questionnaire to assess their levels of sport practice, as well the Portuguese versions of the Physical Self-Perception Profile (Fox & Corbin, 1989), the Subjective Happiness Scale (Lyubomirsky & Lepper, 1999), the Satisfaction With Life Scale (Diener, Emmons, Larsen, & Griffin, 1985) and the Positive and Negative Affect Schedule (Watson, Clark, & Tellegen, 1988). Overall, the analysis of the results showed that students who were more physically confident and evaluated their lives more positively did sport more regularly; however, results also showed that students who reported lower levels of physical strength and self-esteem practiced sport more regularly than their peers.

Como avaliar a percepção de competência e aceitação social de crianças com paralisia cerebral?Estudo inicial para a determinação das propriedades psicométricas da versão portuguesa da Dutch Pictorial Scale of Perceived Competence and Social Acceptance in Children with Cerebral Palsy / How to measure children with cerebral palsy's perception of competence and social acceptance?Preliminary study to determinate the psychometric properties of the portuguese version of the Dutch Pictorial Scale of Perceived Competence and Social Acceptance in Children with Cerebral Palsy

O principal objectivo deste estudo consistiu na determinação das propriedades psicométricas da versão portuguesa da Dutch Pictorial Scale of Perceived Competence and Social Acceptance in Children with Cerebral Palsy. Participaram neste estudo 108 crianças (60 rapazes e 48 raparigas) com paralisia cerebral, com idades entre os 4 e os 9 anos, distribuídas em hemiplegicas, diplégicas e tetraplégicas e com um QI igual ou superior a 70. A maioria (n=98) frequentava o ensino regular, enquanto apenas 10 frequentavam escolas especiais. O instrumento foi aplicado num segundo momento a 41 das crianças, com um intervalo máximo de duas semanas. Os resultados da correlação de Pearson relativamente aos dois momentos (entre 0.80 e 0.98) bem como o valor do alfa de Cronbach (entre 0.69 e 0.93) evidenciam uma boa fiabilidade da versão portuguesa. Também os valores das inter-correlações entre as quatro subescalas (r=0.60 ou superior) bem como os valores médios das respostas das crianças em função de diferentes características (idade, sexo, condição médica) para as diferentes subescalas apoiam a validade interna do instrumento. Em suma, os resultados do nosso estudo, na sua globalidade, parecem confirmar as propriedades psicométricas da versão portuguesa da Dutch Pictorial Scale, pelo que esta parece constituir-se como um instrumento fiável e válido para a avaliação do modo como as crianças portuguesas com Paralisia Cerebral se percebem no domínio cognitivo, físico e social.

The main purpose of this study was to examine the psychometric properties of the Portuguese version of the Dutch Pictorial Scale of Perceived Competence and Social Acceptance in Children with Cerebral Palsy. The sample was made up of 108 children (60 boys and 48 girls) with cerebral palsy, aged between 4 and 9 years, who suffered hemiplegia, diplegia or quadriplegia and had an IQ of 70 or higher. Most of the children (n=98) attended regular schools (integrated in kindergarten or primary school); indeed, only 10 children attended special schools for children with special needs. A sub-sample of 41 children filled out the scale in two different moments, separated one to two weeks maximum. The results of Pearson correlations between the two administrations (ranging 0.80 to 0.98) and the Cronbach's alpha (ranging 0.69 to 0.93) showed good reliability of the Portuguese version of the Dutch Pictorial Scale. Moreover, the inter-correlations between the four subscales (r=0.60 or higher) as well the mean scores associated by children with different characteristics (age, sex, medical condition) to the different subscales supported the internal validity of the instrument. Therefore, this study provides initial evidence about the psychometric properties of the Portuguese version of the Dutch Pictorial Scale, which is why its use is recommended to assess the perceived competence and social acceptance of Portuguese children with cerebral palsy.