Más allá del cuidado: construcción narrativa Identitaria del rol del cuidador principal Informal (CPI) de pacientes diagnosticados con esclerosis lateral amiotrófica (ELA)

Abstract

The present research work is based on the interest in understanding the identity narrative constructions of three (03) Informal Primary Caregivers (CPI) who are in charge of the care of a family member diagnosed with Amyotrophic Lateral Sclerosis (ALS), this in order to know the narratives around caring. Accordingly, the systemic paradigm in relation to social constructionism is retaken, which together account for the personal experiences seen as a united whole, thus organizing the identity narrative constructions of each of the participants within the Colombian sociocultural context. In this way, the qualitative methodology is taken from the narrative method, which allowed the realization of two semi-structured interviews and the development of the Sluzki Social Network instrument with each of the participants. In this way, it was possible to identify the meanings that each of the participants has regarding this caregiving work and in turn recognize the various support systems around care. Finally, the encounters were analyzed through discourse analysis that took up six transversal categories for a clear understanding of the identity narratives of the participants. Taking into account the above information it was possible for us to know the different understandings that exist around the same difficulty and understand that each of the experiences narrated in the encounters has a different meaning that permeates the identity, seeing the informal main caregiver, more beyond care.