Necessary Information for the Families of Children with Autism Spectrum Disorder: An Integrative Review

Gisele Weissheimer, Julia Mazul Santana, Victória Beatriz Trevisan Nóbrega Martins Ruthes, Verônica De Azevedo Mazza

Resumen


Información necesaria para las familias de niños con desorden del espectro autista: una revisión integradora

Informações necessárias às famílias de crianças com transtorno do espectro autista: uma revisão integrativa

Objetivo: identificar las evidencias disponibles acerca de las informaciones necesarias para las familias de niños con desorden del espectro autista (DEA).

Método: revisión integradora de la literatura, desde seis bases de datos con descriptores específicos para cada una. Se seleccionaron estudios publicados sobre el tema entre enero de 2014 y febrero de 2020, disponibles de forma integral y gratuita. Para síntesis y análisis de los datos, se llevó a cabo una categorización temática. Se incluyeron 41 artículos.

Resultados: se obtuvieron dos categorías temáticas. En la primera, “necesidad de información”, se identificaron la falta de conocimiento de las familias acerca del DEA (tratamiento, cómo manejar la conducta de los niños en esta condición y perspectivas futuras), los derechos del niño con DEA y los recursos para el acceso a las informaciones. En la segunda categoría, “fuentes de soporte informacional accedidas por las familias”, se encontraron las fuentes informales (familiares, amigos, vecinos y padres de niños con DEA), formales (profesionales e instituciones), internet y otros recursos (libros, workshops, podcasts). Se evidenciaron aspectos positivos y negativos en el empleo de tales fuentes.

Conclusiones: se encontró un patrón de informaciones requeridas por los familiares, así como de fuentes utilizadas para obtenerlas. Los hallazgos son relevantes para subsidiar la organización de fuentes de soporte informacional a las familias y a la comunidad. 

Para citar este artículo / To reference this article / Para citar este artigo

Weissheimer GSantana JMRuthes VBTNMMazza VA. Necessary Information for the Families of Children with Autism Spectrum Disorder: An Integrative Review. Aquichan. 2020;20(2):e2028. DOI: https://doi.org/10.5294/aqui.2020.20.2.8

Recibido: 23/03/2020

Aceptado: 09/06/2020

Publicado: 13/07/2020

Financiación: el artículo fue auspiciado por el Consejo Nacional de Desarrollo Científico y Tecnológico, Ministerio de la Tecnología, Ciencia e Información de Brasil, con recursos del Proyecto Universal, aprobado por la convocatoria MCTI/CNPq 1/2016. Además, se deriva de la primera etapa de desarrollo de la tesis doctoral titulada “Soporte informacional a las familias de niños con autismo: validación de contenido”, presentada en la Universidade Federal do Paraná, Brasil.


Palabras clave


Desorden del espectro autista; acceso a la información; familia; niño; apoyo social

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DOI: https://doi.org/10.5294/aqui.2020.20.2.8

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