Quality of life in families of patients with moderate intellectual disabilities

• Grant number: 13/24910-6
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: March 01, 2014
• End date: February 28, 2015
• Field of knowledge: Health Sciences - Collective Health - Public Health
• Principal Investigator: Débora Gusmão Melo
• Grantee: Rodrigo Victor Viana Tomaz
• Host Institution: Centro de Ciências Biológicas e da Saúde (CCBS). Universidade Federal de São Carlos (UFSCAR). São Carlos , SP, Brazil

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 moderate 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).

Scientific publications

(References retrieved automatically from Web of Science and SciELO through information on FAPESP grants and their corresponding numbers as mentioned in the publications by the authors)

RODRIGO VICTOR VIANA TOMAZ; VANESSA DE ARRUDA SANTOS; LUCIMAR RETTO DA SILVA DE AVÓ; CARLA MARIA RAMOS GERMANO; DÉBORA GUSMÃO MELO. Impacto da deficiência intelectual moderada na dinâmica e na qualidade de vida familiar: um estudo clínico-qualitativo. Cadernos de Saúde Pública, v. 33, n. 11, 2017-11-21. (13/24498-8, 13/24910-6)