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Existential transformations in the process of facing amyotrophic lateral sclerosis by the family caregiver

Transformaciones existenciales en el proceso de enfrentamiento de la esclerosis lateral amiotrofica por parte del cuidador familiar

ABSTRACT

Objective

To understand the existential transformations of the family caregiver of a person living with Amyotrophic Lateral Sclerosis.

Method

Qualitative study based on assumptions of Martin Heidegger Existential Phenomenology, with 12 family caregivers of the person with Amyotrophic Lateral Sclerosis, in Alagoas. The testimonies were obtained from June 2019 to March 2020 and analyzed, categorized, and discussed based on the theoretical-philosophical framework adopted and thematic literature.

Results

Phenomenological sense of the existential transformations of the family caregiver of a person living with Amyotrophic Lateral Sclerosis, unveiled with the categories: Being the caregiver of the person living with ALS; Being responsible for decision making; Resignifying the existence in view of the possibility of loss; Spirituality influencing the transformation process.

Conclusions

The family caregiver has an appropriate life due to the inherent vicissitudes of the disease, which provides moving moments that lead him to rethink his existence and to value life.

Keywords
Nursing; Qualitative research; Amyotrophic lateral sclerosis; Caregivers

Universidade Federal do Rio Grande do Sul. Escola de Enfermagem Rua São Manoel, 963 -Campus da Saúde , 90.620-110 - Porto Alegre - RS - Brasil, Fone: (55 51) 3308-5242 / Fax: (55 51) 3308-5436 - Porto Alegre - RS - Brazil
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