Ser cuidador familiar da pessoa com Esclerose Lateral Amiotrófica na perspectiva da fenomenologia existencial

Abstract

The family caregivers of patients with Amyotrophic Lateral Sclerosis are people susceptible to the reverberations of the disease because they experience the patient's illness experience very closely. In this context, the research proposed here has as its object of research the experiences of family caregivers of people living with Amyotrophic Lateral Sclerosis, starting from the objective of unveiling the experiences of family caregivers of people living with ALS through the application of the theoretical- methodological analysis of Martin Heidegger's phenomenology. With a descriptive qualitative design with a phenomenological approach, the study was developed based on the guiding question: what is the veiled phenomenon in the experiences of family caregivers of people living with Amyotrophic Lateral Sclerosis? The means used to reach the answer was based on a phenomenological interview based on a semi-structured instrument, applied to twelve family caregivers of ALS patients residing in the State of Alagoas, from September 2019 to March 2020. After transcription from the interviews based on Heidegger's comprehensive methodical moments, the results were grouped into three ontological thematic categories: discovering that they belong, even if indirectly, to the world-of-ALS, which included the insertion of the caregiver into the world permeated by ALS and its inherent impacts; understanding the course of the disease described from the perspective of the family caregiver, a category that exposes the family member's own perception about the diagnosis and everything it causes in their lives; and revealing the existential transformations arising from the ALS coping process, which involves the transformations resulting from the adaptations required by the scenario implemented by ALS, which implies the discovery of postures and strategies that make living with the disease possible. It was concluded that the course of the shared experiences shows that there is a world of meanings and senses covered by the role of being a family caregiver of a person who lives with ALS, which requires a detailed and attentive look at the theme.