Sleep medicine · 2026
'I had to change my way of thinking, change my emotions, and learn how to react': A narrative study on the management of narcolepsy symptoms and coping with the disease from patients' perspectives.
СтатьяНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Hlodak Jan, Feketeova Eva, Dankulincova Veselska Zuzana, Madarasova Geckova Andrea
Аннотация
BACKGROUND: Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness. In NT1, cataplexy is a key symptom, involving sudden loss of muscle tone, typically triggered by strong emotions. Additional features may include sleep paralysis, hallucinations, fragmented nocturnal sleep, and vivid dreams. Symptom management is considered most effective when pharmacological (medication) and non-pharmacological (behavioural) approaches are combined. Patients' coping strategies for living with a chronic condition may influence symptom management. This study aimed to describe patients' experiences with the management of narcolepsy symptoms, coping strategies, and the role of social support.
METHODS: This qualitative study employed semi-structured interviews with 25 patients with narcolepsy. Expert-validated interview guides ensured methodological rigor. Transcripts were inductively coded to generate a codebook, followed by deductive thematic analysis. Findings were synthesized into an integrative narrative using the OSOP method, supported by quotes from the interviews.
RESULTS: Participants reported employing a range of self-management strategies. We identified three main themes. First theme focused on the behavioural management of: a) EDS (daytime naps, scheduled sleep, and lifestyle modifications), b) cataplexy (avoiding or regulating emotional expression), and c) other symptoms (increased awareness and symptom control). Second theme, psychological coping with the disease, involved patients' mindsets and perceptions, reflecting a) how they adapt to living with narcolepsy and b) how they mentally and emotionally interpret their condition. The third theme described how social support from a) family, b) friends, and c) other patients emerged as a crucial facilitator of adjustment and symptom management.
CONCLUSION: Symptom management and overall coping are shaped by patients' perceptions of their diagnosis and their perceived ability to manage the condition. Social perception and support also influence the adjustment process. For some patients, non-pharmacological strategies may substantially reduce or even replace the need for medication.
METHODS: This qualitative study employed semi-structured interviews with 25 patients with narcolepsy. Expert-validated interview guides ensured methodological rigor. Transcripts were inductively coded to generate a codebook, followed by deductive thematic analysis. Findings were synthesized into an integrative narrative using the OSOP method, supported by quotes from the interviews.
RESULTS: Participants reported employing a range of self-management strategies. We identified three main themes. First theme focused on the behavioural management of: a) EDS (daytime naps, scheduled sleep, and lifestyle modifications), b) cataplexy (avoiding or regulating emotional expression), and c) other symptoms (increased awareness and symptom control). Second theme, psychological coping with the disease, involved patients' mindsets and perceptions, reflecting a) how they adapt to living with narcolepsy and b) how they mentally and emotionally interpret their condition. The third theme described how social support from a) family, b) friends, and c) other patients emerged as a crucial facilitator of adjustment and symptom management.
CONCLUSION: Symptom management and overall coping are shaped by patients' perceptions of their diagnosis and their perceived ability to manage the condition. Social perception and support also influence the adjustment process. For some patients, non-pharmacological strategies may substantially reduce or even replace the need for medication.