Living with Amyotrophic Lateral Sclerosis: Exploring what matters to patients and caregivers through their experiences.

BACKGROUND: Amyotrophic Lateral Sclerosis (ALS) is a rare neurodegenerative disease the causes of which are not fully understood, that leads to early death. From the diagnosis, ALS significantly impacts the quality of life (QoL) for patients and their caregivers due to its unique characteristics. Both patients and their caregivers, formal and informal, increasingly feel the need to share their experiences, communicate their needs, and talk about what living with ALS entails. OBJECTIVES: Given the few studies available in the literature on this topic, the study's aim is to explore the significance of ALS for patients and caregivers through their testimonies and to identify the collective representations and symbolic categories that influence their lives. DESIGN AND METHODS: A total of 118 spontaneous written texts (67 produced by women) (81.752 tokens, TTR index=0.145; H% index=54.6%) collected from the web, from 67 ALS patients, 41 informal and 10 formal caregivers, were analyzed using the Emotional Text Mining (ETM) technique, with the T-Lab Software. RESULTS: Four communication axes were identified: management of the disease (34.25%; physical vs. emotional), care (26.58%; technological vs. relational), support (21.39%; self-directed vs. social), and effort (17.78%; personal and institutional). The five clusters positioned in this factorial space relate to disease onset (12.29%), difficulties (30.78%), medical examinations (29.39%), coping strategies (14.79%), and needs (18.75%). There are differences between genders and groups. CONCLUSION: The interpretation of the results enables an understanding of the cultural-symbolic system of ALS patients and caregivers, as well as the impact of the disease on their QoL. Through this, personalized interventions can be designed to promote resources and psychological well-being.