Tomaz Rodrigo Victor Viana, Santos Vanessa de Arruda, Silva de Avó Lucimar Retto da, Germano Carla Maria Ramos, Melo Débora Gusmão
Departamento de Medicina, Universidade Federal de São Carlos, São Carlos, Brasil.
Cad Saude Publica. 2017 Nov 21;33(11):e00096016. doi: 10.1590/0102-311X00096016.
This qualitative clinical study investigated the impact of moderate intellectual disability on family dynamics and quality of life. The data were collected using individual interviews with 15 mothers of children with intellectual disabilities, as a convenience sample, and examined with categorical thematic content analysis. The results were discussed using a comprehensive and interpretative approach. Analysis of the interviews showed that care for children with intellectual disabilities is centered on the mother, contributing to the change in family relations. Religious coping appeared as a common strategy for adjusting. Children with intellectual disabilities had less access to services and support than they needed in the areas of health, education, and leisure. Financial constraints and difficulties in community living had a negative impact on the quality of family life. Emotional and psychological support for all the family members, and practical and social support, including income distribution and access to adequate services, proved essential for the well-being of children with intellectual disabilities and their families.
这项定性临床研究调查了中度智力残疾对家庭动态和生活质量的影响。数据收集采用对15名智障儿童母亲进行个体访谈的方式，作为便利样本，并通过分类主题内容分析进行检验。研究结果采用全面且具解释性的方法进行讨论。访谈分析表明，对智障儿童的照料以母亲为中心，这导致了家庭关系的变化。宗教应对方式是一种常见的调适策略。智障儿童在健康、教育和休闲等领域获得的服务和支持比他们所需的要少。经济限制和社区生活中的困难对家庭生活质量产生了负面影响。事实证明，为所有家庭成员提供情感和心理支持，以及包括收入分配和获得充分服务在内的实际和社会支持，对于智障儿童及其家庭的幸福至关重要。
