Giving a voice to cataplectic experience: recollections from patients with narcolepsy type 1

Franceschini, Christian; Fante, Chiara; Folli, Maria Claudia; Filosa, Maria; Pizza, Fabio; Antelmi, Elena; Ingravallo, Francesca; Plazzi, Giuseppe

doi:10.5664/jcsm.8286

Cited by 7 publications

(5 citation statements)

References 43 publications

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“…This kind of analysis with T-Lab, which has been carried out in previous studies on sleeping (Franceschini, Fante, et al, 2020) and dreaming (Gennaro et al, 2020;Margherita et al, 2015Margherita et al, , 2017, is particularly useful for the aims of this study.…”

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Are we dreaming or are we awake? A quali–quantitative analysis of dream narratives and dreaming process during the COVID-19 pandemic.

et al. 2021

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The COVID-19 pandemic and the restrictive measures taken against the spread of the contagion can be considered as traumatic events having a major impact on mental health. Dreams after undergoing traumatic experiences could "replay" traumatic scenes or have a para-therapeutic role that facilitates connections between a traumatic event and associated emotions. However, the studies carried out thus far in the field of sleep and dreams during the COVID-19 pandemic have mostly focused on sleep disorders, emotional tones, and contents of dreams. The aim of the present study was to explore, from a qualitative-quantitative perspective, the contents of dreams and the functions of dreaming during the COVID-19 pandemic. A sample of 1,095 subjects who decide to recount their dreams, during the early phase of the COVID-19 outbreak, was involved. A part of the Mannheim Dream questionnaire was also examined, considering both dream recall and the attitudes toward the dreams-both meaningful and transformative-as indicators of the dreaming process. A cluster analysis was performed on dream narratives through the T-Lab software. In all, 4 thematic clusters emerged: Escape From the Threat; The Work of Mourning, Unrecalled Dreams; COVID-19: As Manifest Content. The factorial mapping organized 3 vectors of meaning, representative of the function of dreaming: Remembering, Repeating, and Working Through; From

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Are we dreaming or are we awake? A quali–quantitative analysis of dream narratives and dreaming process during the COVID-19 pandemic.

et al. 2021

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“…Up to 53% of narcolepsy patients have been reported to have anxiety disorders such as panic attacks and social phobias [ 48 ]. Several factors might contribute to anxiety in individuals with NT1, such as social stigma [ 4 , 6 ], shame [ 48 ], fear of falling asleep in front of other people, and unpredictability of cataplectic attacks [ 65 ]. Thus, patients with NT1 might use online gaming platforms to fulfill the need for social connections in a ‘‘safe’’ environment and provide the opportunity to engage in social activities in a more comfortable context than face-to-face socialization.…”

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confidence: 99%

Exploring Addictive Online Behaviors in Patients with Narcolepsy Type 1

et al. 2022

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Background: Narcolepsy type 1 (NT1) is a rare neurological sleep disorder caused by the loss of neurons that produce hypocretin—a peptide that plays a crucial role in addictive behaviors. We aimed to compare, for the first time, levels of problematic online gaming, problematic social media use, and compulsive Internet use between NT1 patients and healthy controls (HC), and to evaluate the association between anxiety, depression, and emotion dysregulation with addictive online behaviors in NT1 patients. Methods: A total of 43 patients with NT1 and 86 sex- and age-matched HC participated in an online cross-sectional survey. Results: NT1 patients did not differ from HC in terms of problematic social media use and compulsive Internet use but displayed higher levels of problematic online gaming compared to HC. Higher levels of emotion dysregulation were significantly associated with higher levels of problematic social media use and compulsive Internet use, while none of the tested factors were associated with problematic online gaming. Conclusion: NT1 patients and HC had similar levels of problematic social media use and compulsive Internet use, but NT1 patients showed higher levels of problematic online gaming. Emotion dysregulation might be an intervention target for reducing compulsive Internet use and problematic social media use.

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“…Moreover, literature has often reported that among all symptoms, EDS has a major impact on the quality of life, relationships, and school/work conditions of an NT1 patient: being in public may be extremely troubling because of the fear of a sudden sleep attack or falling to the ground as a consequence of cataplexy ( Daniels et al, 2001 ; Vignatelli et al, 2004 , 2011 ; Avis et al, 2015 ; Raggi et al, 2019 ). This constant preoccupation with others’ opinions often results in a stigmatization process that affects these patients’ social life ( Rovere et al, 2008 ; Kapella et al, 2015 ; Franceschini et al, 2020 ). It has been clear for years ( Alaia, 1992 ; Rovere et al, 2008 ; Franceschini et al, 2020 ) that narcolepsy treatments cannot be limited to pharmacological therapy but needs to be implemented with social support and help from a peer who is aware of the challenges brought by this disease.…”

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confidence: 99%

Can a Peer Support the Process of Self-Management in Narcolepsy? A Qualitative Narrative Analysis of a Narcoleptic Patient

et al. 2020

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Introduction: Narcolepsy type 1 (NT1) is a chronic and rare sleep disorder typically arising during adolescence and young adulthood. The main symptoms are excessive daytime sleepiness and cataplexy, a prototypical fall down elicited by huge emotions. Social relationships, school, work, and general health perception are frequently impaired in patients, who often show lower quality-of-life scores. We report which management strategies a young patient (DMG) adopted to cope with NT1 during his growth, avoiding exhibiting serious impairments to his global functioning. Methods: A clinical psychologist explores the history of the patient's disease and the self-acquired strategies used to cope with the symptoms. The patient's global adaptation to the disease, stress-related managing skills, and overall well-being are assessed by standardized scales [Illness Behavior Questionnaire (IBQ); Coping Orientations to Problems Experienced (COPE); and Psychological General Well-Being Index (PGWBI)]. We conducted a qualitative analysis of the patient's narration of his illness according to the procedure of the Grounded Theory. The MAXQDA software program was used to code the verbatim transcript. Results: From the qualitative analysis of the interview, three thematic cores emerged: 1) the disease history; 2) the patient's friendship with AD, a friend of his age diagnosed with NT1 since childhood; 3) the strategies used to deal with his symptoms before the diagnosis of NT1 and the related treatment. From the psychometric tests, the patient presents good coping strategies in dealing with stressful problems and events based mainly on acceptance and positive reinterpretation of the stressful situation. Conclusion: This case shows that comparing peers of the same age and suffering from the same illness improve the patient's self-management ability to cope and live well with NT1.

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Giving a voice to cataplectic experience: recollections from patients with narcolepsy type 1

Cited by 7 publications

References 43 publications

Are we dreaming or are we awake? A quali–quantitative analysis of dream narratives and dreaming process during the COVID-19 pandemic.

Are we dreaming or are we awake? A quali–quantitative analysis of dream narratives and dreaming process during the COVID-19 pandemic.

Exploring Addictive Online Behaviors in Patients with Narcolepsy Type 1

Can a Peer Support the Process of Self-Management in Narcolepsy? A Qualitative Narrative Analysis of a Narcoleptic Patient

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