Abstract
Many of the same sleep problems seen in typically developing (TD) children are frequently experienced by children with epilepsy (CWE). Behavioural sleep interventions (BSIs) are commonly and successfully used to treat these sleep problems in TD children and in some neurodevelopmental disorder populations. Therefore, BSIs should be effective in CWE, however, there are special seizure-related considerations for CWE and their parents which may be salient to consider in any future BSI development for this group. The current study sought to identify, from parents, if there were special considerations for the content and delivery of an online BSI for parents of CWE. Semi-structured interviews were conducted with nine mothers of CWE and thematic analysis was conducted on the interview data. Ten themes were apparent which represented what parents wanted from any online BSI for CWE. Parents wanted (i) other parents’ views and real-life experiences to be included, (ii) recognition of how changes over time may influence the appropriateness of using various sleep-management options, (iii) to be presented with a range of sleep management options from which they could select, (iv) personalised information and suggestions for behaviour-change options, (v) help to address child anxiety around sleep, (vi) for the advice and behaviour-change options to be practical, (vii) general educational information about sleep and the relationship between sleep and epilepsy, (viii) for parental worries and concerns to be acknowledged, (ix) to receive help, support, and reassurance around children’s sleep; and (x) to include the child in the intervention. It was clear that any online BSI would require specific adaptations and additions (to content and delivery format) to best meet the needs of parents of CWE. It is hoped that having identified what parents want from on online BSI for CWE will allow these factors to be acknowledged in future intervention development, with the intention to optimise parental engagement and intervention effectiveness. Practical suggestions for how these aspects could be integrated into any online BSI are suggested.
Highlights
Epilepsy, characterised by recurrent seizures, is a common neurological condition which affects 1% of the population, with nearly 65,000 children and young people affected in the United Kingdom (Joint Epilepsy Council, 2011)
The current paper reports qualitative findings from interviews with parents of children with epilepsy (CWE) that sought to identify broad factors related to sleep-management which were important to parents to inform the development and delivery of an online Behavioural sleep interventions (BSIs)
Parents wanted (i) other parents’ views and real-life experiences to be included; (ii) recognition of how changes over time may influence the appropriateness of using various sleep-management options; (iii) to be presented with a range of sleep management options from which they could select; (iv) personalised information and suggestions for behaviour-change options; (v) help to address child anxiety around sleep; (vi) for the advice and behaviour change options to be practical; (vii) general educational information about sleep and the relationship between sleep and epilepsy; (viii) for parental worries and concerns to be acknowledged; (ix) to receive help, support, and reassurance around children’s sleep; and (x) to include the child in the intervention
Summary
Epilepsy, characterised by recurrent seizures, is a common neurological condition which affects 1% of the population, with nearly 65,000 children and young people affected in the United Kingdom (Joint Epilepsy Council, 2011). The type of sleep problems experienced by CWE are varied (see Gibbon et al, 2019 and Kothare and Kaleyias, 2010 for a detailed discussion of sleep issues in children with epilepsy) but can present as similar to the sleep problems experienced by TD children and commonly take the form of issues with sleep initiation (settling and going off to sleep) and/or maintenance (night or early morning waking) (Stores et al, 1998; Owens and Mindell, 2011; Gutter et al, 2013) These symptoms could arise as a result of various sleep disorders (or other factors related to the child’s epilepsy or other clinical conditions).
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
