Peer-reviewed article
'I Didn't Even Associate the Two Together at All': A Qualitative Study of 'Information Work' Undertaken by Parents and Their Children With Epilepsy to Make Sense of Sleep and Seizures.
Saron H, Cook G, Wiggs L, Dietz K, Bray L et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This qualitative study explored how parents and children with epilepsy search for and make sense of information about sleep and seizures. Researchers interviewed 22 parents and 22 children (aged 4-13) embedded within a randomised trial of an online sleep intervention. Families were highly motivated to seek information but faced significant gaps in credible, accessible guidance about sleep and epilepsy, leading them to develop their own strategies for gathering and interpreting information.
Key points
- Five interrelated 'information work' themes were identified: parent-led themes of seeking information, surveillance, sharing information and experiences, and struggling with information; and a child-led theme of making sense of sleep and seizures
- Families reported persistent gaps in credible, relevant and accessible guidance, particularly regarding the relationship between sleep and epilepsy
- Parents and children developed their own strategies for gathering, producing and interpreting information, combining emotional labour, technology use and parental vigilance
- Many children with epilepsy and their parents become highly motivated information seekers
- Strong patient and public involvement was embedded throughout the study, with an Advisory Panel of children, parents and an adult with lived epilepsy experience shaping all aspects of the research
Limitations
The study does not evaluate the effectiveness of any sleep intervention but rather explores families' experiences of information-seeking; the qualitative design and embedded nature within a specific trial means findings may not generalise beyond this population and setting.
Abstract
Background Epilepsy in children presents challenges for families who must navigate the condition itself, along with complex medical information and the emotional realities of daily care. Underpinning a recent randomised control trial (CASTLE Sleep-E) was the acknowledgement that sleep was a problem that had not been well addressed in other intervention studies in this population. The CASTLE Sleep-E trial evaluated an online behavioural sleep intervention (CASTLE Online Sleep Intervention COSI]). An embedded qualitative study aimed to explore participating families' experiences of epilepsy, sleep and the trial itself. This paper focuses on the findings relating to participants' experiences of searching for information about sleep and epilepsy. Methods Interpretive descriptive qualitative study embedded within a randomised controlled trial using remote interviews (October 2023 to February 2024) with parents (n = 22) and children (n = 22, aged 4-13 years) with epilepsy from both arms of the trial (COSI plus standard care or standard care alone). Data were reflexively thematically analysed. Patient and public involvement (parents and children) was central to both the main trial and this qualitative study. Findings Five interrelated 'information work' themes were identified, four parent-led themes: seeking information, surveillance as information work, sharing information and experiences, and struggling with information, and one child-led theme: making sense of sleep and seizures. Conclusion Many children with epilepsy and their parents become highly motivated information seekers; however, they face persistent gaps in credible, relevant and accessible guidance, particularly regarding the role of sleep in epilepsy. In response, they develop their own strategies for gathering, producing and interpreting information, often blending emotional labour, technology use and parental vigilance to improve sleep or address any sleep disturbance. These findings highlight a clear need for developing and implementing appropriate sleep support within paediatric epilepsy care. Patient or public contribution Public and patient involvement (PPIE) was central to both the main trial and this qualitative study. A dedicated Advisory Panel (three children with epilepsy, ten parents of children with epilepsy and one adult who has lived with epilepsy since childhood) met regularly over a period of 6 years throughout the trial. Their insights and input shaped, informed and strengthened many aspects of our work from inception to dissemination, including refining the study aims and design, co-developing materials and advising on data interpretation. Two of the Advisory Panel were co-applicants on the programme grant. Advisory Panel members also contributed to the analysis and interpretation of qualitative data and reviewed the final manuscript for this paper, and their contributions are gratefully acknowledged. They were all compensated for their time and had any associated costs reimbursed. A more detailed account of PPIE is reported using the GRIPP2-SF checklist.