Dr. Georgia Cook, Department of Psychology, Health and Professional Development, Center for Psychological Research, Health and Life Sciences, Oxford Brookes University, and researchers aimed at understanding the experiences of parents of children living with epilepsy. These children often face sleep problems, but there is little insight into how parents and caregivers are affected or how to manage sleep disorders in children.
The neurological condition is characterized by recurrent seizures and is diagnosed in 0.32% to 0.55% of children under 18 years of age. In addition to sleep problems, these children commonly have behavioral, cognitive, attentional, academic, and psychosocial deficits in their lives compared to children without epilepsy. It has been shown to reduce the quality of
According to this study, sleep and epilepsy have a complex, bidirectional relationship and have been described as ‘unfortunate companions’. Epilepsy exacerbates the struggle to initiate sleep (calmness and falling asleep), the maintenance of sleep (the experience of waking up at night or early in the morning), sleep duration, daytime sleepiness, and sleep anxiety.
Unfortunate Companions: Childhood Epilepsy and Sleep
Qualitative research included interviews with nine mothers in 2018. The focus was to capture parental perceptions and experiences related to children’s sleep habits, their management, the impact of sleep disorders on children and their families, and available support.
The majority of children had benign rolandic epilepsy (n=5), two had focal epilepsy, and the remaining patients were generalized and unspecified. Interviews he organized around three main research questions and were conducted face-to-face or by video/telephone by a pair of researchers, depending on participant availability.
1. Nature of childhood sleep problems associated with epilepsy
As an initial research question, the researchers solicited parent reports on four themes surrounding children’s sleep problems. problems during the night; parasomnia; child anxiety about sleep.
Getting ready for sleep was one of the most frequently reported problems, and appeared to affect mothers, children with epilepsy, and the whole family. , Parasomnia outbreaks such as sleep phobia have posed long-standing challenges for both parents and children.
2. Parental Experience with Dealing with Sleep Problems
The portions of the interview focused on mothers’ experiences and related issues in managing their children’s sleep were presented in seven themes.
- The long-standing and challenging nature of children’s sleep problems
- Children’s sleep management strategies
- Challenges associated with managing sleep over time
- Relationship between sleep and seizures
- Adverse Effects of Sleep Deprivation on Daytime Function
- antiepileptic drugs
- Concerns of mothers about their child’s sleep.
Based on parent-reported results, additional nighttime monitoring was common, and researchers acknowledged that it wasn’t just sleep that was negatively affected by this, but anxiety as well. Reactive strategies implemented by parents to help their children manage sleep problems, such as co-sleeping, have detrimental effects on sleep for both parents and children, despite motivation to improve sleep health. was shown.
3. Support for parents of epileptic children
The unmet needs of this population and their caregivers presented in this study are the final research questions addressing parents’ perceptions of available help and support in raising children with epilepsy around sleep. I came to A majority of mothers say they lack adequate help and support in managing their children’s common sleep problems.
Some parents have asked for advice on these disorders to be standardized in a resource format so that health professionals can easily direct or provide relevant guidance to parents. He said the data indicated a need for ongoing information and support not only after diagnosis, but also at the time of diagnosis.
“Mothers were aware of the link between sleep and seizures, but felt they lacked guidance from their medical team and others on how to manage and improve their child’s sleep.” They wrote, “This appeared to increase maternal anxiety and feelings of ‘helplessness.’ It emphasizes the need to have appropriate help and support available to support sleep.”
The study “‘No one said anything about sleep’: A qualitative survey of the sleep experience of mothers of epileptic children” expectations of good health.