A Qualitative Investigation Into What Parents Want From an Online Behavioural Sleep Intervention for Children With Epilepsy

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.

‘No one's ever said anything about sleep’: A qualitative investigation into mothers' experiences of sleep in children with epilepsy

“…This finding emphasizes the need to ensure adequate help and support is available to help support healthy sleep in CWE, as identified in previous work. 19,21 Current results suggest this is crucial around the time of diagnosis and concur with previous research that there is a need for ongoing information and support, beyond diagnosis. 33 The availability of ongoing, sleep-related support is an important unmet need for this clinical group.…”

“…34 The current findings need to be considered in the context of some limitations. The sample size (n = 9) was smaller than intended elsewhere, 21 and some of the key issues highlighted were considered in the development of an online intervention specifically designed for this clinical population. 22 Addressing sleep in CWE, and its manage-…”

“…20 Research suggests that there may be special considerations for managing sleep in CWE, which could helpfully be addressed to likely increase families' engagement with and feasibility of intervention. 21 A greater understanding of these considerations could helpfully direct future intervention development 22 and ensure broader service provision is focused on the areas of most need. However, little research has explored the lived experience of sleep and sleep problems in CWE on parents.…”

Parents’/caregivers’ fears and concerns about their child’s epilepsy: A scoping review

“…Whilst the management of seizures is important, the evidence shows that much of the management of epilepsy is invisible [ 16 ] and the management of childhood epilepsy needs to be holistic and consider more than just seizure management as core elements of living with epilepsy [ 17 ]. Parents have reported a lack of support for these wider aspects of epilepsy care and that their fears and concerns, for example about their child’s sleep [ 18 ] can go unacknowledged and unaddressed by health care professionals. Whilst there has been some investigation of parents fears and concerns associated with caring for their child with a long-term condition [ 19 ], including diabetes [ 20 ] and asthma [ 21 ] there is less known about these in relation to being a parent of a child with epilepsy.…”

Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E: A protocol for a randomised controlled trial comparing an online behavioural sleep intervention with standard care in children with Rolandic epilepsy

“…Table 3 provides a brief overview; detailed reports on the development, content, and evaluation of COSI have been published. 15 16 COSI is divided into 13 modules (1 screening for child-specific sleep problems to allow tailoring, 10 content, 1 additional resources, 1 initially hidden evaluation), of which three are compulsory (1 screening, 2 content). The non-compulsory modules are recommended based on screening outcome, but all modules are accessible, repeatable, and printable.…”