Introduction Children and young people (CYP) with epilepsy consult clinicians for management of their seizures but may require advice and support with a range of broader topics, including sleep. However, understanding of clinicians’ perspectives of providing this support is limited. This study aimed to identify, from clinicians, the extent to which they are asked about sleep in clinical appointments by CYP with epilepsy and their parents/carers and, further, to establish how equipped clinicians feel to support families around this topic.
Method As part of a wider cross-sectional online survey, 88 UK-based clinicians who worked with CYP (aged 0–18 years) with epilepsy and their parents/carers were asked about their experiences of supporting and advising around child sleep. Quantitative and qualitative data were generated.
Results The final sample was predominantly consultants and epilepsy specialist nurses based in England. Child sleep was reported as a topic raised frequently by both CYP (51.2%) and parents (84.1%) in clinic. Although only about 50% of clinicians felt able to provide support about sleep. Commonly reported challenges in being able to provide advice or signposting about sleep included lack of specific training in this area and lack of sufficient time during clinic appointments. Clinicians suggested that sleep resources for parents/carers and for CYP with epilepsy would be useful. Clinicians felt that they could benefit from training, information or resources to support their practice related to child sleep.
Discussion Sleep is an important topic for CYP with epilepsy and their parents. The results of this study suggest that many clinicians may not be equipped to meet the needs of families in this area. Informational resources about sleep (for CYP, parents and clinicians) could be useful and offer the potential to mitigate, although not overcome, some of the existing challenges.
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