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Sleep and epilepsy have been described as "unfortunate bedfellows" due to the complex relationship, and yet caretakers report a lack of support managing these issues commonly experienced by children.
Georgia Cook, PhD, Department of Psychology, Health and Professional Development, Centre for Psychological Research, 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.
The majority of children had benign rolandic epilepsy (n=5), 2 children had focal epilepsy, and the remaining patients were generalized and unspecified. Interviews were structured around 3 main research questions and conducted by a pair of investigators either face-to-face, or on a video/phone call, depending on the participant’s availability.
As the first research question, investigators sought parent-reports on 4 themes surrounding their child’s sleep problems: settling for sleep; night-waking issues; parasomnias; and child anxiety around sleep.
Settling in preparation for sleep was one of the most frequently reported issues, which appeared to impact mothers, the child with epilepsy, and the rest of the family. Additionally, the occurrence of parasomnias like nightmares, sleep waking, and sleep terrors posed long standing challenges for both the parent and child, according to the results.
The portion of the interview focusing on the mothers’ experiences managing their child’s sleep and any related issues were represented by 7 themes:
Additional nighttime monitoring was prevalent in results based on parent reports and investigators acknowledged that sleep is not the only thing negatively impacted by this, but anxiety, as well. Reactive strategies implemented by the parents, like room sharing or co-sleeping, to help their child manage sleep issues exhibited detrimental effects on both the parents’ and childrens’ sleep, despite the motivation to improve sleep health.
The unmet need of this population and their caretakers presented in this investigation culminated in the final research question addressing parents’ perception of available help and support with parenting a child with epilepsy around sleep. The majority of mothers stated that they lacked relevant help and support in managing the prevalent problems with sleep in their children.
Some parents urged for advice on these obstacles to be standardized in resource form so healthcare professionals can easily direct or provide parents with relevant guidance. Investigators stated that these data displayed the necessity of ongoing information and support following diagnosis, but also at the time of diagnosis.
“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.”
The study, “‘No one's ever said anything about sleep’: A qualitative investigation into mothers' experiences of sleep in children with epilepsy” was published in Health Expectations.