Living with Amyotrophic Lateral Sclerosis (ALS): Navigating the Various Emotional and Psychosocial Challenges

Abstract

Abstract: Background/Objectives: Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disorder with no known cure, leading to significant emotional and psychosocial challenges for both patients and their families. This study explored the lived experiences of ALS patients to deepen the understanding of their unique psychosocial needs, aiming to inform and improve patient-centered care approaches. Methods: Using a phenomenological approach, this qualitative study conducted in-depth interviews with 12 purposefully selected ALS patients from a general hospital in China. The collected data were analyzed to uncover key themes and sub-themes reflecting of the patients’ lived experiences. Results: The analysis revealed four central themes with respective sub-themes: a) Embracing Adversities of Disease Progression – encompassing Physical Disorders, Cognitive Differences, and Psychological Distress; b) Adopting Differences of Cognitive Diversity – highlighting Self-Recognition Diversity, Role Adaptation Difficulty, and the Neglect of Privacy; c) Satisfying the Need for Support – including Social, Family, Financial, and Medical Support; and d) Coping Challenges and Strategies – such as Communication Barriers, Decision-Making Conflicts, Future Uncertainty, and Diversity of Resilience. These themes illustrate ALS patients’ multidimensional challenges, particularly in end-of-life care contexts. Conclusions: The findings emphasize the necessity for comprehensive psychosocial support systems for ALS patients. A model for psychological intervention rooted in Multifaceted Comprehensive Cooperative Support is recommended to aid patients’ adaptation and coping mechanisms throughout their ALS journey.