In the Shadow of Sleep: An Investigation on the Psychosocial Effects of Narcolepsy

Narcolepsy is a neurological sleep disorder that causes excessive daytime sleepiness, unpreventable sleep attacks and cataplexy (sudden loss of muscle tone). This study aims to examine the daily lives of patients with narcolepsy and to investigate the psychosocial impact of narcolepsy on patients. Eight volunteer narcolepsy patients (M = 36,4, SD = 6,65), above 18 years old (7 female, 1 male), participated in the study. In this qualitative study, semi- structured interviews were conducted with the participants and the responses received in these interviews were analyzed by Thematic Analysis method. Accordingly, 5 main themes and 11 sub-themes were identified. These themes are Diagnosis Process, Daily Life and Functioning, Support, Discrimination and Prejudice, Needs and Expectations. The participants described the difficulties they experienced during the diagnosis process, their adaptation to the disease, their expectations from their environment and society, their need for support, and their experiences of discrimination and prejudice. It was observed that the participants frequently expressed that they wanted the disease to be better known, and their environment to raise awareness and support them. These findings shed light on the emotional states of narcolepsy patients, the process that patients go through, and the psychosocial effects of the disease on patients. It also raises awareness by providing in-depth information about the disease and the lives of patients. This study will be a contribution to the gap in the literature on narcolepsy and its psychosocial effects.
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