081“我的伴侣只想睡觉”:一项与患有嗜睡症或特发性嗜睡症的伴侣一起生活的定性研究。

C Rodriguez, B Bullock, S Buzwell
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引用次数: 0

摘要

发作性睡病和特发性嗜睡症(IH)是慢性睡眠障碍,会对患者的身体、情绪和社会功能产生负面影响。发作性睡病和IH也可能影响与患者关系密切的人(即伴侣、父母)的HRQoL。该项目探讨了发作性睡病或IH患者的伴侣的经历,包括与诊断为发作性睡病的人生活在一起如何影响他们自己的HRQoL。方法采用半结构化访谈法,对8例发作性睡T1、T2和IH患者的伴侣进行问卷调查。使用反身性主题分析对数据进行分析,以找出参与者叙述中出现的共同主题。结果确定了5个主题(和2个副主题):1)二元同一性的变化;2)对亲密关系的负面影响;3)孤独;4)维持关系的牺牲,5)(a)普通公众和(b)卫生专业人员对缺乏知识和信息的不满。这项新颖的探索性研究确定了受伴侣睡眠障碍诊断影响最大的几个社会和情感功能主题;与患者表现出负面影响的区域相对应的主题。发作性睡病和IH的社会心理干预应包括患者的伴侣,以减少诊断对家庭系统的影响,并改善总体HRQoL。
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O081 “My partner just wants to sleep”: A qualitative study of the experience of living with a partner with Narcolepsy or Idiopathic Hypersomnia.
Abstract Introduction Narcolepsy and Idiopathic Hypersomnia (IH) are chronic sleep disorders that negatively impact sufferers’ Health-Related Quality of Life (HRQoL) across physical, emotional, and social functioning. Narcolepsy and IH may also impact the HRQoL of those close to the patient (i.e., partners, parents). This project explored the experiences of partners of people with Narcolepsy or IH, including how living with someone with the diagnoses had impacted their own HRQoL. Methods In this qualitative study, a semi-structured interview was used to collect data from 8 partners of people with Narcolepsy T1, Narcolepsy T2 and IH. The data were analyzed using Reflexive Thematic Analysis to find common themes emerging from the participants’ narratives. Results Five themes (and 2 sub-themes) were identified: 1) changes in dyadic identity; 2) negative impact on intimacy; 3) loneliness; 4) sacrifices to maintain the relationship, and 5) dissatisfaction at the lack of knowledge and information among (a) the general public, and (b) health professionals. Conclusions This novel, exploratory study identified several themes of social and emotional functioning most impacted by a partner’s sleep disorder diagnosis; themes which correspond with the areas shown to be negatively affected in patients. Psychosocial interventions for Narcolepsy and IH should include patients’ partners to reduce the impact of the diagnoses on the family system, and improve overall HRQoL.
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