ALS and the lifeworld: losing the body while retaining the mind : a literature-based study from the persons perspective
Year: 2025
Type: dissertation
Abstract: Background Amyotrophic Lateral Sclerosis (ALS) is a fatal and progressive neurodegenerative disease that leads to the loss of bodily functions while cognitive abilities often are still intact. Although health care focuses on symptom management and supportive interventions, less attention has been paid to a person’s lived experiences. Aim The aim of this study was to describe a person’s experiences of living with ALS. Method A literature-based study inspired by meta synthesis was conducted based on an analysis of qualitative research according to Fribergs fivestep model. Seven scientific articles were analyzed. Results Two themes with five subthemes were identified. Loss and changes described the loss of body function and autonomy, and a feeling of being a burden. Need of support and meaning described how people with ALS balanced between acceptance and despair, the searching for meaning through family and faith and mixed experiences of security and uncertainty in healthcare. Conclusion ALS is a complex disease that leads to physical decline which increases dependence on others in daily life and negatively affects identity, independence, quality of life and the lifeworld. Support from relatives helps the person to find acceptance and meaning despite the terminal nature of the disease.
Authors: Berisa, Ardiona, Ginina, Krasimira
Language: Swedish
Subfield: Clinical Neurology
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W7125358059