Afrontamiento familiar ante el diagnóstico y evolución de la enfermedad ataxia de friedreich

Abstract

Introduction: Friedreich's ataxia is considered rare or infrequent because it has a prevalence of 4 / 1,000,000 and an incidence of 6 / 1,000,000 inhabitants: This pathology is hereditary neurodegenerative of a progressive nature that causes dependence in those who suffer from it, therefore that family coping with the diagnosis and evolution of the disease is a determining factor in achieving wellbeing and quality of life for the patient and the family. Objective: To describe the

family

coping with the diagnosis and evolution of the neurodegenerative disease Friedreich's Ataxia in one of its members. Methods: A qualitative-descriptive investigation was carried out, semi-structured interviews were carried out with the family group of the patient with Friedreich's Ataxia, keeping the ethical principles of autonomy, respect and confidentiality of the information; Once the interviewees had been completed, the information was triangulated and the analysis was carried out using the methodology of Demaziére D. and Dubar C. Results: From the diagnosis and evolution of Friedreich's Ataxia, the relatives experienced negative feelings, economic changes emerged family, social and quality of life, in addition, care is difficult, so the main caregiver presented overload. However, the family has managed to cope positively using strategies focused on the problem and emotions. Conclusions: The family used coping strategies focused on emotions and focused on the problem, since they used emotional self-control, acceptance of responsibilities, positive reassessment, family and spiritual support, search for information about the disease and treatment alternatives.