Experiencias de los cuidadores de un paciente con esclerosis lateral amiotrófica

Abstract

Introduction: Amyotrophic Lateral Sclerosis is a neurodegenerative disease that produces weakness of the muscles of the extremities, thorax, abdomen and bulbar muscles. Caregivers are generally family members who take responsibility for providing care causing a change in their lives. Objective: To analyze the experiences of caregivers of a patient with Amyotrophic Lateral Sclerosis. Methods: Qualitative research, phenomenological exploratory. The study participants were the members of a family who carried out the role of caregivers. As inclusion criteria, people over 18 years of age and family members who cared for the patient for a period of at least one month were taken into account; children, older adults and family members who did not live with the patient were excluded. Once informed consent was obtained, the information was collected through semi-structured interviews that were recorded and then transcribed word by word. The data analysis was carried out following the theory based on the data, emerging categories and subcategories of study participants' speech. Results: Amyotrophic Lateral Sclerosis is a rare disease that when diagnosed resembles an unknown world; its evolution means a physical and mental deterioration of the person who suffers it and, unfortunately, access to health care is restricted. The caregiver is generally an informal person who takes on this responsibility and must face all kinds of complications in mobilization, communication, feeding and breathing.