Amyotrophic lateral sclerosis: implications for family caregivers

Abstract

Objective: describe the adaptation difficulties of family caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), registered at the High-Cost Medication center of the Pirineus Regional Health in the city of Anápolis - GO. Method: This is a qualitative approach study using a descriptive method. Participants were previously selected based on inclusion criteria and agreement to participate in the research. Data collection took place at a location chosen by them, through interviews recorded on a smartphone. Data analysis was conducted concurrently with and after data collection. Results: For the results and discussion, 4 (four) were interviewed and are presented in 6 categories: difficulties in care; caregiver burden; family acceptance; learning and doubts of caregivers; about care; adaptation to care in the family nucleus. This evidenced the implications linked to the health team, which are: the need for the health team to stay informed not only about changes related to the disease but also about the difficulties faced by the family, so that they can be assisted regarding their doubts and during the adaptation and progression of the disease. Conclusion: the study seeks to bring a new perspective that goes beyond the patient, highlighting the needs of the family, treating not only the patient but also each family within its particularities.