“Narcolepsy is this entity that is driving us in a car and we have no idea where we’re going. It’s in complete control and you’re never going to like this driver. But every now and then it might take you somewhere kind of even funny and interesting.” This quote is taken from an interview with a parent who has a child diagnosed with narcolepsy. This statement poignantly captures the reality that while families experience pain from having very little sense of control of this incurable condition, they also discover new ways of being resilient that they otherwise would not have known. A common source of pain for families affected by narcolepsy are the misperceptions about the condition. People often assume narcolepsy is a sleep disorder that causes spontaneous sleep at any given time. However, with the proliferation of the narcolepsy diagnosis following the H1N1 epidemic in 2010, an increase in medical and clinical research has provided more insight into the condition as an autoimmune disease. In this workshop, presenters will provide an historical narrative about narcolepsy, addressing common myths and describing the complexity of this autoimmune disease and its impact on patients and the family system. The biopsychosocial impact of narcolepsy will be shared, drawing upon recent literature as well as results from the presenters’ recent mixed methods narcolepsy study. Researchers partnered with Wake Up Narcolepsy to distribute surveys, followed by in-depth interviews to gain a better understanding of the patient and family member perspective. Moreover, the study uniquely examines the perspective of parents raising children with narcolepsy. This presentation will utilize the Family Systems and Illness (FSI) model to frame the assessment, conceptualization, and treatment of families with narcolepsy. Themes that promote insight, empathy, creativity, and resiliency when working with families affected by narcolepsy will be described
- Identify common myths associated with narcolepsy and describe the biopsychosocial-historical components of the condition.
- Describe salient themes related to the parent experience of having narcolepsy and/or having a child with narcolepsy.
- Identify interventions to working with families affected by narcolepsy as well as professional collaborative approaches to providing comprehensive care to patients and family members.