Sleep quality and daytime sleepiness amongst family caregivers of children with Spinal Muscular Atrophy

• Published in: Research in developmental disabilities 2024-09, Vol.152, p.104811, Article 104811
• Main Authors: Bulut, Numan, Aydın Yağcıoğlu, Güllü, Uğur, Fatma, Yayıcı Köken, Özlem, Gürbüz, İpek, Yılmaz, Öznur, Topaloğlu, Haluk, Karaduman, Ayşe
• Format: Article
• Language: English
• Subjects: Adult; Caregivers; Caregivers - psychology; Case-Control Studies; Child; Child, Preschool; Daytime sleepiness; Disorders of Excessive Somnolence - epidemiology; Family; Female; Humans; Male; Muscular Atrophy, Spinal - nursing; Muscular Atrophy, Spinal - psychology; Sleep Quality; Sleepiness; Spinal muscular atrophy
• ISSN: 0891-4222; 1873-3379; 1873-3379
• DOI: 10.1016/j.ridd.2024.104811

While there are limited studies focusing on sleep quality of family caregivers of children with Spinal Muscular Atrophy (SMA), there are no studies on daytime sleepiness in SMA. This study aimed a) to compare the sleep quality and daytime sleepiness between caregivers of children with SMA and those of healthy peers and b) to investigate the sleep quality and daytime sleepiness of family caregivers of children with different types of SMA. This study included 30 family caregivers of children with SMA (SMA Type 1:12, SMA Type 2:10, and SMA Type 3:8) and 31 family caregivers of healthy peers. Sleep quality and daytime sleepiness of family caregivers were evaluated using the Pittsburg Sleep Quality Index (PSQI) and the Epworth Sleepiness Scale (EPS), consecutively. Demographic characteristics of children with SMA and healthy peers were similar (p > 0.05). The mean ages of family caregivers of children with SMA and healthy peers were 36.07 ± 5.84 and 35.26 ± 5.02 years, respectively (p = 0.6). The PSQI scores of family caregivers of children with SMA (7.50 ± 3.90 points) were lower than those of healthy peers (4.09 ± 1.97 points) (p  0.05). Family caregivers of children with SMA had poor sleep quality but similar daytime sleepiness compared with those of healthy peers. Among SMA types, family caregivers had similar sleep quality and daytime sleepiness. It was demonstrated that the sleep quality of family caregivers should be taken into consideration in the disease management of SMA. •The sleep quality of family caregivers of children with SMA is poor.•The family caregivers of children with different types of SMA had similar sleep quality.•The family caregivers of both children with SMA and healthy peers have normal daytime sleepiness.