Intervenções de enfermagem aplicadas a pacientes com esclerose lateral amiotrófica em cuidados paliativos: revisão de escopo

Abstract

Amyotrophic lateral sclerosis (ALS) is a rare and irreversible chronic neurodegenerative disease that affects motor neurons, leading to progressive muscular atrophy and weakening, with preservation of lucidity, cognition, and intelligence. In the context of ALS, palliative care stands out for promoting quality of life through prevention and relief of physical, emotional, and spiritual suffering. Nursing interventions are useful for planning care, both independently and collaboratively, and it is essential to identify actions that benefit the patient with ALS in palliative care, from the diagnosis of the disease to the end-of-life condition. Considering that the literature lacks evidence and identification of recommendations, the present study aimed to map the available evidence on nursing interventions applied to patients with amyotrophic lateral sclerosis in palliative care. The method chosen was a scoping review based on the recommendations of the Joanna Briggs Institute (JBI) and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR). The Population-Concept-Context strategy was used to compose the research question, "What are the nursing interventions targeting ALS patients in palliative care?" The search was conducted from January to March 2021, in nine indexed databases and three repositories of theses and dissertations, with no time limit, in Portuguese, English and Spanish languages. Two reviewers selected the studies, with no disagreement as to inclusion/exclusion. Then the data were extracted and analyzed, and 17 studies made up the final sample. The publications included articles and theses of various nationalities and in greater number in the year 2011. The selected studies showed research results in different stages of the disease, from diagnosis to end of life, and in different places for treatment and follow-up. Nursing actions were divided into care, with emphasis on individualization of the care plan, and management, directed to care coordination and early referral to specialists. Symptom management for pain and suffering relief, communication skills especially directed to end-of-life care, and patient and family orientations were highlighted. Finally, it is possible to infer that nursing interventions are relevant throughout the course of the disease, collaborating to improve the quality of life of both patients and their families. It is suggested that further studies be developed in search of the improvement of nursing interventions, which may provide a better quality of life for patients with ALS