The investigation of amyotrophic lateral sclerosis disease through qualitative methods from a psychosocial perspective

ABSTRACT THE INVESTIGATION OF AMYOTROPHIC LATERAL SCLEROSIS DISEASE THROUGH QUALITATIVE METHODS FROM A PSYCHOSOCIAL PERSPECTIVE This thesis aims to explore the psychosocial experiences of individuals diagnosed with Amyotrophic Lateral Sclerosis (ALS) and their caregiving relatives throughout the illness trajectory, from the initial recognition of symptoms to diagnosis and care processes, using qualitative research methods. ALS is approached not merely as a progressive neurological disease, but as a multilayered life experience that reorganizes time, body, language, relationships, and the sense of self. The study is grounded in a psychosocial perspective, focusing on process experiences in which individual subjectivities and social-relational contexts are deeply intertwined. Data were collected through in-depth interviews, written narratives, and ethnographic observations with individuals living with ALS and their caregivers. The analysis was conducted using narrative, discourse-oriented, and thick description-based qualitative analytic approaches. Findings reveal that the ALS experience does not follow a uniform or linear course. Instead, it unfolds as a dynamic process shaped by themes such as uncertainty, rupture, waiting, care, solidarity, and meaning-making. For many participants, the moment of diagnosis constitutes a biographical disruption, while caregiving relationships and social connections play a crucial role in the reorganization of life narratives. Language, silences, and storytelling emerge as central spaces through which the experience is both expressed and transformed. By moving beyond statistical representations of a rare disease, this study seeks to render visible the lived experiences and relational dimensions of ALS. It aims to contribute to clinical psychology by offering a psychosocial understanding that can inform assessment, therapeutic work, and support practices with individuals living with ALS and their caregivers. Keywords: Amyotrophic Lateral Sclerosis, psychosocial experience, process experiences, caregiving relationships, qualitative research