Development and Evaluation of the CASTLE Trial Online Sleep Intervention for Parents of Children with Epilepsy

Abstract

Introduction: Many of the sleep problems experienced by children with epilepsy (CWE) have the same behavioural basis as common sleep problems seen in typically developing (TD) children. Behavioural sleep interventions (BSIs) are widely used to treat these sleep problems in TD children and are hypothesised to be effective for CWE. However, specific considerations need to be addressed and incorporated into a BSI for CWE to ensure the intervention is tailored to this population's needs. This paper details developing and tailoring an online BSI for parents of CWE, to be used in the CASTLE (Changing Agendas on Sleep, Treatment and Learning in Epilepsy) Sleep-E clinical trial.Method: In phase one, two existing theory-driven paediatric BSIs were adapted into a novel online behavioural sleep intervention (CASTLE Online Sleep Intervention or COSI) which specifically incorporated the needs and requirements reported by nine parents of CWE. Scoping their needs included conducting interviews with three CWE so that they could contribute to the overall intervention content. In phase two, six of these parents evaluated COSI, reviewing and feeding back on COSI until parental approval for content and functionality was achieved.Results: In phase one, a range of adaptations was made to the content and presentation of standardised intervention material to acknowledge and emphasise the key seizure-specific issues to ensure COSI best met parents of CWE's needs. Adaptations included embedding parent and child experiences in the intervention, including particular information requested by parents, such as the links between sleep and seizures and managing child and parental anxieties around sleep, as well as developing functionality to personalise the delivery of content. In phase two, parents confirmed that they found the final version of COSI to be functional and appropriate (after one round of review) for use by parents of CWE and that 100% would recommend it to other families who have CWE.Discussion: It is hoped that the use of evidence-based BSIs, adapted to consider salient epilepsy-specific factors, will increase parent-engagement, COSI's relevance for this particular patient group and overall efficacy in improving sleep in CWE. The effectiveness of COSI will be tested in the CASTLE Sleep-E clinical trial (https://castlestudy.org.uk/).

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.…”

“…COSI and CASTLE Sleep-E outcome-selection were co-produced by affected children, young people, and their parents, sleep- and epilepsy experts. 8 15–17 The CASTLE Sleep-E protocol follows Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT), 18 19 its extension for Patient Reported Outcomes (SPIRIT-PRO), 20 and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2). 21…”

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

“…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.…”

“…This descriptive qualitative study was conducted as part of the CASTLE (Changing Agendas on Sleep, Treatment and Learning in Epilepsy) programme of studies. Parents were asked about their child's sleep, any sleep problems, the experience of parenting a CWE around sleep and their perception of available support as part of a wider interview to inform the development of an online sleep intervention 21,22. …”