Narcolepsy and Disruption to Social Functioning
Helena Culbertson, Dorothy Bruck

This study sought to create an in depth understanding of the impact of living with narcolepsy (a disorder of excessive daytime sleepiness) through qualitative research. The study used an essentially phenomenological methodology. Twenty- seven participants (18 females, 9 males, Mean age = 54.30, range = 26-90 years) were recruited from medical files in Canada and the narcolepsy support group in
Australia. Data were collected via an open-ended narrative inviting the informant to focus on the impact of the disorder and analysed thematically. The issue of social context emerged as a key theme in understanding perceptions of the impact of living with narcolepsy. A secondary theme was that narcolepsy was experienced as an invisible illness. Thus, the impact of living with narcolepsy is embedded in the need to maintain acceptable social functioning (within family, friendship and work relationships) and, related to this, cognitive functioning. This is complicated by the often indistinguishable nature of the symptoms from behaviors that people without narcolepsy experience. Health professionals need to understand that narcolepsy differs from other illnesses in that its key impact is a disruption to normal social functioning.


narcolepsy; sleep disorders; sleep

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