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"Sleeping My Life Away": Experiences of Living with Idiopathic Hypersomnia.

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Title: "Sleeping My Life Away": Experiences of Living with Idiopathic Hypersomnia.
Authors: Bothelius, Kristoffer (AUTHOR), Salimi, Nadjela (AUTHOR), Lehtilä, Rebecca E. M. (AUTHOR), Furmark, Tomas (AUTHOR), Nehlin Gordh, Christina (AUTHOR)
Source: Behavioral Sleep Medicine. May/Jun2025, Vol. 23 Issue 3, p360-368. 9p.
Subjects: Idiopathic hypersomnia, Patients' attitudes, Self-compassion, Naps (Sleep), Social impact
Abstract: Objectives: Individuals with idiopathic hypersomnia (IH) report several subjective emotional and cognitive symptoms, as well as impairments in daily functioning. Coping strategies are frequently used, but their effectiveness is perceived to be minimal. The aim of the present study was to delve into the patient perspective on navigating life with IH, emphasizing patients' personal narratives. Method: Utilizing a purposeful sample method, twelve participants diagnosed with IH underwent telephone interviews guided by a semi-structured protocol. The interviews were subjected to thematic analysis to extract relevant themes. Results: Analysis unveiled three primary themes along with subthemes: 1) Being confined, characterized by excessive daytime sleepiness, negative emotional processes and cognitive disturbances, 2) Missing out on life, involving loss of time and adverse social consequences, and 3) Trying to cope, encompassing strategies like napping, adapting, activating oneself and mentally fighting sleepiness, while also embracing acceptance and self-compassion. Conclusions: The identified themes reflected numerous aspects previously reported to be associated with living with IH. Notably, the study brought novel subthemes to light, such as the existential dilemma of "sleeping one's life away" and feelings of guilt and shame. Furthermore, the study underscored the significance of acceptance and self-compassion as coping strategies. [ABSTRACT FROM AUTHOR]
Copyright of Behavioral Sleep Medicine is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: "Sleeping My Life Away": Experiences of Living with Idiopathic Hypersomnia.
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  Data: <searchLink fieldCode="AR" term="%22Bothelius%2C+Kristoffer%22">Bothelius, Kristoffer</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Salimi%2C+Nadjela%22">Salimi, Nadjela</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Lehtilä%2C+Rebecca+E%2E+M%2E%22">Lehtilä, Rebecca E. M.</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Furmark%2C+Tomas%22">Furmark, Tomas</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Nehlin+Gordh%2C+Christina%22">Nehlin Gordh, Christina</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Behavioral+Sleep+Medicine%22">Behavioral Sleep Medicine</searchLink>. May/Jun2025, Vol. 23 Issue 3, p360-368. 9p.
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  Data: <searchLink fieldCode="DE" term="%22Idiopathic+hypersomnia%22">Idiopathic hypersomnia</searchLink><br /><searchLink fieldCode="DE" term="%22Patients'+attitudes%22">Patients' attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Self-compassion%22">Self-compassion</searchLink><br /><searchLink fieldCode="DE" term="%22Naps+%28Sleep%29%22">Naps (Sleep)</searchLink><br /><searchLink fieldCode="DE" term="%22Social+impact%22">Social impact</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Objectives: Individuals with idiopathic hypersomnia (IH) report several subjective emotional and cognitive symptoms, as well as impairments in daily functioning. Coping strategies are frequently used, but their effectiveness is perceived to be minimal. The aim of the present study was to delve into the patient perspective on navigating life with IH, emphasizing patients' personal narratives. Method: Utilizing a purposeful sample method, twelve participants diagnosed with IH underwent telephone interviews guided by a semi-structured protocol. The interviews were subjected to thematic analysis to extract relevant themes. Results: Analysis unveiled three primary themes along with subthemes: 1) Being confined, characterized by excessive daytime sleepiness, negative emotional processes and cognitive disturbances, 2) Missing out on life, involving loss of time and adverse social consequences, and 3) Trying to cope, encompassing strategies like napping, adapting, activating oneself and mentally fighting sleepiness, while also embracing acceptance and self-compassion. Conclusions: The identified themes reflected numerous aspects previously reported to be associated with living with IH. Notably, the study brought novel subthemes to light, such as the existential dilemma of "sleeping one's life away" and feelings of guilt and shame. Furthermore, the study underscored the significance of acceptance and self-compassion as coping strategies. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Behavioral Sleep Medicine is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1080/15402002.2025.2475913
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      – Code: eng
        Text: English
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        Type: general
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      – SubjectFull: Self-compassion
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              M: 05
              Text: May/Jun2025
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              Y: 2025
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