Burden of family caregivers of children with special needs health

• Grant number: 16/12335-5
• Support Opportunities: Scholarships in Brazil - Scientific Initiation
• Start date: May 01, 2017
• End date: April 30, 2018
• Field of knowledge: Health Sciences - Nursing - Pediatric Nursing
• Principal Investigator: Aline Cristiane Cavicchioli Okido
• Grantee: Daniela Zuccolotto Rodrigues
• Host Institution: Centro de Ciências Biológicas e da Saúde (CCBS). Universidade Federal de São Carlos (UFSCAR). São Carlos , SP, Brazil

Abstract

Children with Special Health Needs (CRIANES) have demands for specific care, continuous and long-lasting that go beyond those required by other children. Caring for a CRIANES imposes family life reorganization, causing mismatches and burden, especially considering the main caregiver. This study has as main objective characterize CRIANES and their families with regard to clinical and socioeconomic indicators and analyze the physical, emotional and social burden of the CRIANES' caregivers. It is a cross-sectional study and a quantitative approach which will be held in a municipality in the state of São Paulo. The participants in the study will be caregivers of CRIANES enrolled in four health care institutions that provide multidisciplinary care in the municipality. The production of empirical material will occur through the following instruments: characterization tool for participants and Burden Interview (BI) - Burden Scale for Informal Caregivers. It is expected that the results of this study strengthen follow-up actions of CRIANES and their families at home and minimize the burden imposed by the arrival of a child who requires a complex care demand. (AU)