The Role of Nurses in Caring for Patients with Friedreich’s Ataxia: A Literature Review

Abstract

Introduction: Friedreich’s ataxia is a hereditary, rare, progressive, and multisystem neurodegenerative disease, characterized by impairment of motor coordination, balance, gait, speech, and swallowing. It may also be associated with cardiomyopathy, diabetes mellitus, and osteomuscular deformities. As a chronic and disabling condition, it significantly affects functionality, autonomy, and the quality of life of the affected person, in addition to impacting the family and support network. Objective: To analyze, in the literature, the main care needs and nursing interventions directed at people with Friedreich’s ataxia. Methods: This is a literature review of a descriptive and reflective nature, conducted in the databases Biblioteca Virtual em Saúde, SciELO, PubMed/MEDLINE, and Google Scholar, with narrative analysis of the selected studies. Results: The analysis showed that nursing should act longitudinally, with continuous functional assessment, fall prevention, skin protection, management of eliminations, attention to communication and swallowing, encouragement of possible self-care, family guidance, and emotional support. The findings reinforce the complexity of care for people with Friedreich’s ataxia, requiring a continuous and integrated approach that encompasses clinical, rehabilitative, and psychosocial aspects, also involving the family and support network. Conclusion: It is concluded that nurses play a central role in the follow-up of people with Friedreich’s ataxia, especially in coordinating clinical, rehabilitative, home, and family care, although important gaps still exist in the specific scientific production in this area.