'Eu nem mesmo associei os dois juntos em tudo': Um estudo qualitativo do 'trabalho de informação' Undertake pelos pais e seus filhos com Epilepsia para fazer sentido do sono e convulsões

Resumo original em inglês

O que aconteceu

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.

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.

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.

O que encontraram

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.

Por que isso importa

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.

Resumo publicado sob licença CC BY. A tradução para o português ainda não chegou a este estudo.