Caracterización de los conocimientos de las madres sobre la discapacidad de sus hijos y su vínculo con la dinámica familiar / Characterization of the knowledge of mothers concerning their children's disability and the relation with the family dynamics / Caracterização dos conhecimentos das mães sobre a incapacidade de seus filhos e seu vínculo com a dinâmica familiar

El propósito del estudio es establecer los conocimientos, la dinámica familiar y comunitaria de madres de hijos con discapacidad que sirvan de base para la instrumentación de programas de intervención. Participaron 42 madres con edades entre 19 y 49 años (M = 31.14) de un Centro de Rehabilitación Infantil perteneciente a la Secretaría de la Defensa Nacional en México. Se utilizó una guía de entrevista semi-estructurada para explorar los conocimientos, la dinámica familiar y comunitaria de las familias. Las madres reportaron que no recibieron preparación de cómo tratar a sus hijos; sin embargo, ellas consideran la importancia de adquirir conocimientos especializados para entender y tratar al menor. Las madres que no tienen los conocimientos necesarios sobre la discapacidad de su hijo no son capaces de entender ni aceptar la condición del niño, conllevando a la negación del problema, inconformidad, culpa y depresión. Se observó en el estudio que una adecuada preparación de la madre después del nacimiento de su hijo, acerca de la discapacidad, puede proveer una mejor interacción y funcionamiento de estas familias.

The purpose of this study is to enquire about the knowledge, as well as about the family and community dynamics of mothers of children with disabilities, as a basis to implement intervention programs. Participants were 42 mothers aged between 19 and 49 years (M= 31.14) who attended a Children's Rehabilitation Center belonging to the National Defense Secretariat in Mexico [SEDENA, for its Spanish acronym]. Semi-structured interviews were used to assess the mother's knowledge on the disability of the child and the family and community dynamics. Mothers reported receiving no training on how to treat their children, though they considered the importance of acquiring expertise to understand and treat the child. Mothers who do not have the necessary knowledge about their child's disability are not able to understand or accept the child's condition, leading to a denial of the problem, dissatisfaction, guilt and depression. It was noted in the study that proper preparation of the mother after the birth of her child, in terms of the disability can provide a better interaction and functioning of these families.

O propósito do estudo é estabelecer os conhecimentos, a dinâmica familiar e comunitária de mães de filhos com incapacidade que sirvam de base para a instrumentação de programas de intervenção. Participaram 42 mães com idades entre 19 e 49 anos (M = 31.14) de um Centro de Recuperação Infantil pertencentes à Secretaria de Defesa Nacional no México. Utilizou-se um roteiro de entrevista semiestruturada para explorar os conhecimentos, a dinâmica familiar e comunitária das famílias. As mães relataram que não receberam preparação de como cuidar seus filhos; porém, elas consideram a importância de adquirir conhecimentos especializados para entender e tratar ao menor. As mães que não têm os conhecimentos necessários sobre a incapacidade de seu filho não são capazes de entender nem aceitar a condição da criança, levando à negação do problema, inconformidade, culpa e depressão. Observou-se no estudo que uma preparação adequada da mãe depois do nascimento de seu filho, sobre a incapacidade, pode dar uma melhor interação e funcionamento destas famílias.

Stress and Family Burden in Mothers of Children with Disabilities.

The present study was designed to assess and compare parenting stress and family burden in mothers of children with disabilities and children without disability. For this purpose, a multi group design was adopted which consisted of five groups of mothers viz. mothers of children with mental disability, mothers of children with both mental and physical disability, mothers of children with physical disability, mothers of deaf and dumb children and mothers of children without disability. Parenting stress index and family burden scale were administered on 125 mothers of children with disabilities and without disability (25mothers in each group), selected from three districts of Haryana state. For statistical analysis, t- test, simple analysis of variance and Duncan‟s post hoc test were used. Results revealed that mothers of children with both mental and physical disability and mothers of children with mental disability scored significantly higher level of parenting stress and family burden compared to mothers of children with physical disability, mothers of deaf and dumb children, and mothers of children without disability.