Quality of life in families of patients with severe to profound intellectual disabilities

Abstract

Intellectual disability (ID) is the result of intellectual functioning significantly below average, which appears before age 18 and is accompanied by limitations in adaptive functioning. From a clinical standpoint, ID is a symptom of over 2,000 different conditions, including many rare genetic diseases. In Brazil, according to the 2010 Census, 1.4% of the population has some degree of ID. This project aims to investigate the impact of ID on the family dynamics and quality of life, considering the severity of the disability. It is a clinical qualitative study, in which 15 mothers of patients with severe to profound ID will be in-depth interviewed according to a pre-set agenda, which will translate into open questions articulated within a complex network, with the object of study. The collected data will be recorded and will be transcribed reports, composing a corpus that will be investigated by the technique theme/category-based content analysis. The results will be reviewed and discussed with the aid of literature and clinical experience of the researchers, through comprehensive and interpretative approach. Ultimately, it is intended that this study will be as a subsidy for construction of a line of comprehensive care for patients with intellectual disabilities in the Unified Health System (UHS).