Experiences from families of children with cerebral paralysis in context of social vulnerability

Abstract

OBJECTIVE: to describe and to analyze the experience from families of children with cerebral paralysis living under circumstances of social vulnerability. METHOD: six resident families in area with this characteristic were interviewed. It was opted to use the Symbolic Interactionism as theoretic reference and the Thematic Content Analysis of Bardin as analysis method for the data. RESULT: the experience of such families is represented in the subjects: Reorganizing the Life, with the categories "Discovering the way" and "Accommodating the routine", and Stopping a Constant Fight with the categories: "Primary Carer being overcharged", "Coexisting with the preconception", "Having locomotion difficulty" and "Living with financial difficulties". CONCLUSION: the social vulnerability influences how the family bears the chronic condition. Professionals and strategies of public health are a power to minimize impacts including those related to the family budget, but they have not been effective. They need to be sensitized to become supporting resources, to offer and to guide the access to the support networks and to spur the social service in action when necessary. This study adds knowledge to the already existing by pointing out peculiarities of the family experience in situations regarding two variables of difficult handling: chronicity and social vulnerability, evidencing the role of the professional in search of the solution for the confrontation of demands and sufferings together with the family.