Article published by HCP Live
Georgia Cook, PhD, Department of Psychology, Health and Professional Development, Centre for Psychological Re search, Faculty of Health and Life Sciences, Oxford Brookes University, and investigators aimed to understand the experience of parents with children who live with epilepsy. These children often face issues with sleep, but there’s very little insight on how parents and caretakers are affected, or how they manage the sleep disturbances of their children.
The neurological condition is characterized by recurrent seizures, with 0.32%–0.55% of children under the age of 18 having a diagnosis. In addition to problems with sleep, it’s also common for these children to have behavioral, cognitive, attention, academic, and psychosocial deficits, which has been shown to reduce their quality of life when compared with those who don’t have epilepsy.
According to this study, sleep and epilepsy have a complex and bidirectional relationship and have been described as ‘unfortunate bedfellows’. Epilepsy exacerbates the struggle to initiate sleep (settling and falling asleep), maintenance of sleep (experiencing night or early morning wakings), duration of sleep, daytime sleepiness and sleep anxiety.
The qualitative investigation included interviews of 9 mothers from 2018. The focus was to capture parental perceptions and experiences related to their child’s sleep habits, their management, the impact of sleep difficulties on the child and their family, and available support.
“Mothers were aware of the links between sleep and seizures, yet felt that they lacked guidance about how to address or improve their child’s sleep, including from their healthcare teams,” they wrote. “This appeared to heighten maternal anxieties and feelings of ‘helplessness’. This finding emphasizes the need to ensure adequate help and support is available to help support healthy sleep in children with epilepsy, as identified in previous work.”