P107 Cost, Control, Compromise: Exploring the lived experience of narcolepsy in Australia

Abstract

Abstract Introduction Persons with narcolepsy wrote of dissatisfaction with healthcare and unmet psychosocial needs in submissions made to the 2019 parliamentary inquiry on sleep. This study aimed to explore the needs, concerns, and barriers faced by Australians living with narcolepsy. Methods 126 self-reported persons with narcolepsy were recruited from support groups, with one-on-one interviews randomly conducted until saturation (n=24). Interviews were transcribed and analyzed using the framework approach by a multidisciplinary team of five researchers. Results Preliminary analysis highlighted a large psychosocial burden that affected the daily life of those with narcolepsy. Participants described the pervasiveness of symptoms and daily unpredictability of not knowing when symptoms would occur. Subsequent behavioral changes related to self-preservation were identified, including avoidance and self-management of care to exert control. Self-perception and adjustment to living with narcolepsy were informed by external opinions (e.g. societal/workplace expectations, family/friend opinion). Management of narcolepsy involves daytime naps; however, participants feared being negatively judged and perceived as lazy/unproductive if they napped. This led to an unwillingness to disclose/seek accommodations post-diagnosis. Executive dysfunction was frequently described, including impaired ability to recall names, times/dates, and appointments that contributed to school/workplace disruption. Discussion Participants living with narcolepsy spoke of a complex and burdensome condition requiring multidisciplinary management. Significant functional/psychosocial impairment was described, yet participants were not able to access NDIS support. Despite being known for its sleep-related symptoms, participants highlighted cognitive impairment and the subsequent impact on daily function as a concern that many felt was inadequately addressed.