Livet med Amyotrofisk lateralskleros

: En allmän litteraturöversikt

Abstract

Background: Amyotrophic lateral sclerosis (ALS) is currently an incurable and progressive disease. The average life expectancy is between 2-4 years, during those years the patient loses bodily functions as a result of atrophied nerve cells. The nurse aims to provide care and relieve suffering. In order to improve the care given to patients with ALS, an insight into what it can be like to live with the disease is needed. Objective: The objective was to describe patients experiences of living with amyotrophic lateral sclerosis (ALS). Method: A general literature review based on eleven qualitative articles was found through a systematic search in three databases; Cinahl Complete, PubMed and PsycINFO. The articles were reviewed by following Kristianstad University’s template for qualitative article reviews and analyzed by following Friberg’s four-step model. Findings: Two main categories; Physical losses and Uncertainty & readjustment, and four following subcategories; Altered body and its effect on sense of self, Changed family dynamic & social support, Uncertain future & the wait for death and The need to adjust. Discussion: Method discussion includes a discussion based upon ethical aspects and the four quality terms; credibility, dependability, confirmability and transferability, on this general literature review. Result discussion includes a discussion based on three findings; The progressiveness and incurability of the disease causes suffering, Lost independence causes negative feelings and affects self-image and Patients are psychologically affected by a changed family dynamic and involves the model for person-centered care by Ekman et al., ethics and the UN:s sustainable development goals.

Date of Award	2024-Dec
Original language	Swedish
Supervisor	Cecilia Turner (Supervisor) & Erik Piculell (Examiner)