This study will provide the first data on family members of adults with idiopathic hypersomnia (IH) and narcolepsy. The goals of this study are to learn how family members are affected by their loved one’s IH/narcolepsy, how family members provide support, and the types of support family members themselves need. Moreover, we are planning to recruit English- and Spanish-speaking individuals, making this one of the first studies to examine cultural aspects of IH/narcolepsy. Phase 1 of this study involves a survey of family members and partners to obtain information about the impact of IH/narcolepsy on social and emotional health (Family Reported Outcomes Measure). The survey will also collect data on how family members support a loved one with IH/narcolepsy, where family members get support, and family members' satisfaction with existing support. In Phase 2, we will obtain more detailed information about the experience of caregivers/family members by conducting interviews. The interviews will be conducted with dyads (adults with IH/narcolepsy and their partners) as well as unpartnered adults with IH/narcolepsy.
|Effective start/end date||11/15/22 → 11/14/24|
- Harmony Biosciences, LLC (HARMONY AGMT 11/21/22)
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