RESUMO
The Quality of Life Supports Model (QOLSM) is emerging as a new framework that is applicable to people with disabilities in general, but specially to people with intellectual and developmental disabilities (IDD). The aim of this conceptual paper is twofold. Firstly, it aims to show the overlap between the QOLSM and the Convention on the Rights of People with Disabilities (CRPD), highlighting how the former can be used to address many of the goals and rights embedded in the latter. Secondly, the article seeks to illustrate the connection between these two frameworks and highlight the importance of acknowledging and measuring the rights of people with IDD. Therefore, we posit that the new #Rights4MeToo scale is ideal for: (a) providing accessible means and opportunities for people with IDD to identify and communicate their needs regarding their rights; (b) enhancing the supports and services that families and professionals provide to them; and (c) guiding organizations and policies to identify strengths and needs in relation to rights and quality of life. We also discuss future research needs and summarize the main findings of this article, highlighting its implications for practice and research.
RESUMO
PURPOSE/OBJECTIVE: Although the concept of quality of life (QoL) has become a reference framework for the provision of support and services to people with intellectual disability (ID), its conceptualization and application for persons with Down syndrome (DS) have received little attention. This study analyzed QoL outcomes in children and young people with DS and examined the influence of several individual and environmental variables on QoL. RESEARCH METHOD/DESIGN: A cross-sectional study was conducted. Participants were 404 children and young people with DS aged 4 to 21 who were users of 73 organizations providing services to people with ID. The KidsLife-Down Scale was used to assess QoL-related personal outcomes perceived by professionals and relatives. Descriptive statistics were calculated. Correlation coefficients were computed and multiple regression analyses were conducted for each QoL domain and for the composite score. RESULTS: The highest scores were obtained in material well-being, physical well-being, and rights, whereas the lowest scores were observed in self-determination and social inclusion. Multiple regression analyses showed that age, level of ID, level of support needs, degree of dependency, type of schooling, and size of organization were predicting factors of scores in QoL domains. CONCLUSIONS: This study underlines priority areas and relevant variables that must be considered when planning, implementing, and assessing supports and services to improve the QoL of children and young people with DS. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
Assuntos
Síndrome de Down , Deficiência Intelectual , Adolescente , Criança , Estudos Transversais , Humanos , Autonomia Pessoal , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
Research has highlighted that no instrument with adequate evidence of validity and reliability currently exists to assess quality of life (QoL) in children with Down syndrome (DS). Important limitations have been pointed out when existingQoL instruments for children with intellectual disability are applied to this population. The main goal of this research is to adapt the KidsLife scale by selecting the most reliable and discriminant items for children and youth with DS. The sample was composed of 405 children with DS, aged between 4 and 21 years old, attending organizations that provide educational, social, and health services. The field-test version of the KidsLife scale was administered as an informantreport, completed by someone who knew the child well, and who had opportunities to observe him/her over long periods of time in different situations. Evidence of reliability and validity based on the internal structure of the scale is provided. According to the QoL model used to develop the scale, the solution showing the best fit to the data was the one with eight intercorrelated domains. Finally, the implications of the study, its limitations and suggestions for future researchare discussed
La investigación ha puesto de manifiesto que actualmente no existen instrumentos que presenten una adecuada evidencia de validez y fiabilidad para evaluar la calidad de vida (CV) de los niños con síndrome de Down (SD). De hecho, se encuentran importantes limitaciones cuando se aplican a esta población instrumentos de CV diseñados para personas con discapacidad intelectual. El principal objetivo de este trabajo es adaptar la escala KidsLife seleccionando los ítems más fiables y con mayor poder discriminativo para los jóvenes con SD. La muestra estaba formada por 405 jóvenes con SD, con edades comprendidas entre los 4 y los 21 años que asistían a organizaciones proveedoras de servicios educativos, sociales y de salud. La versión piloto de la escala KidsLife la contestó un informante que conocía al joven o a la joven bien, teniendo la oportunidad de observarle durante periodos prolongados de tiempo en diferentes situaciones. Se proporcionan pruebas de la fiabilidad y validez basadas en la estructura interna de la escala. De acuerdo con el modelo de CV utilizado para el desarrollo de la escala, la solución que mostró mejor ajuste a los datos fue la de ocho dimensiones correlacionadas. Finalmente, se discuten las implicaciones del estudio, sus limitaciones y se hacen sugerencias para la investigación futura
Assuntos
Humanos , Masculino , Feminino , Criança , Adolescente , Adulto Jovem , Adulto , Qualidade de Vida/psicologia , Síndrome de Down/psicologia , Psicometria/métodos , Prática Clínica Baseada em Evidências/métodos , Projetos PilotoRESUMO
OBJETIVO: Comparar la vivencia como acompañante en el proceso de parto y explorar los factores que influyen en los padres de dos generaciones en los hospitales de la Comunidad de Madrid. MATERIALES Y MÉTODO: Se utilizó una metodología cualitativa con enfoque fenomenológico mediante la realización de entrevistas semiestructuradas a 2 grupos de padres (acompañantes hace más de 25 años y hace menos de 3 años). Se realizaron 19 entrevistas utilizando la saturación teórica y se llevó a cabo un análisis de contenido de la información obtenida, sometiendo los resultados a un proceso de triangulación de investigadores para su interpretación. RESULTADOS: Los resultados mostraron vivencias diferentes entre ambos grupos. Los padres acompañantes hace más de 25 años realizaron un rol de acompañante pasivo, destacando que no se sintieron integrados por los profesionales. Los acompañantes de hace menos de 3 años llevaron a cabo un rol activo, realizando funciones específicas y destacando una mayor integración. No obstante, si bien los padres más recientes, al contrario que el grupo anterior, acudieron en su totalidad a las sesiones de educación maternal y paternal, refirieron cierta falta de información. CONCLUSIONES: La forma de ejercer el rol de acompañante en el proceso de parto actual difiere de la de hace 20-30 años, con una mayor participación activa por parte de los padres y una mejor integración propiciada por los profesionales sanitarios. No obstante, sigue siendo necesaria una mayor representación de la figura paterna en la educación maternal y paternal que permita una preparación adecuada
OBJECT: To compare the experiences of accompaniment during labour, as well as, exploring the influences upon two generations of parents in the hospitals of the Autonomous region of Madrid. Materials and method: Qualitative methodology with a phenomenological approach based on a semi-structured interview to two groups of fathers (birth companions more than 25 and less than 3 years ago). Once the theoretical object was saturated with collected information, content analysis was generated. Its results were in degraded by process of triangulation in order to be interpreted by other researchers. Results: They results showed different experiences between both groups. The 25-years-ago accompanying parents played a passive companion role, emphasizing that they did not feel integrated by the professionals. The less-than-3-years-ago companions carried out an active role, performing specific functions and emphasizing a greater integration. Nevertheless, even though the most recent parents, unlike the previous group, went in its entirety to maternal and paternal education, they reported a lack of information. Conclusions: The way to perform the companion role in the current birth process, differs from the one performed 20-30 years ago, with a greater active participation by parents and better integration led by health professionals. Nevertheless, a greater representation of the paternal figure in maternal and paternal education is still needed, which allows proper training
