(Handicapped) Caregiver: the social representations of family members about the caregiving process

Abstract

This study aimed to analyze what looking after physically disabled persons with spinal cord injury by trauma means to their caregivers and family members. The analysis of the testimony of eight caregivers, obtained in open interviews, which was methodologically based on the Social Representations Theory (SR), pointed out two main routes: coping with the suffering process in care practice and the troubled waters that permeate this suffering process. These two routes, characterized as SR Central Core and Peripheral System, respectively, consisted of themes like the way of looking at impairment, affectivity, religiosity, social-economical changes and (lack of) technical and institutional support. The results show a handicapped caregiver dedicated to look after someone who is physically disabled, considered incapacitated, and who leads his or her chores with distress and privations, based on guilt and religiosity, supported by ambiguous affection and affected by deteriorating social-economical changes and (lack of) technical and institutional support to practice an activity that implies so many peculiarities. The transformation alternatives of these caregivers' daily life principally lead to a symbiosis of disability with the patient - to live for the physically disabled - or yet, for a few, a sketch to restart personal life projects - to live with the physically disabled.