Young people diagnosed with psychogenic nonepileptic seizures (PNES) years ago - How are they now?

Background: Up to 30% of patients referred to epilepsy centres for drug-resistant epilepsy turn out to have psychogenic nonepileptic seizures (PNES). Patients with PNES are a very heterogeneous population with large differences in regard to underlying causes, seizures severity, and impact on quality of life. There is limited knowledge regarding the long-term seizure prognosis of youth with PNES and its influential factors.

Developing and maintaining health literacy: A continuous emotional, cognitive, and social process for parents of children with epilepsy-A qualitative study.

Childhood epilepsy is often complicated by neurobehavioral comorbidities, and parents are expected to actively engage in managing the condition. Insufficient parental health literacy (HL) has been associated with reduced health outcomes for children with epilepsy. Little is known about the parents' experiences of information seeking, social support, navigating the healthcare system, and interactions with healthcare professionals and how these skills may contribute to the development of sufficient HL.

The Parent Health Literacy Questionnaire (HLQ-Parent). Adaptation and validity testing with parents of children with epilepsy.

Aims: The aim of this study was to adapt the Health Literacy Questionnaire (HLQ) in English and Norwegian for use with parents.

Methods: The research group evaluated all HLQ items and, where relevant, modified them to refocus the attribution of care to that of a child by a parent. Five cognitive interviews with parents were undertaken to gain a detailed depiction of the meanings and processes they used to respond to the HLQ items.

"A bit of everything": Health literacy interventions in chronic conditions - a systematic review.

Objective: To systematically evaluate health literacy (HL) interventions in chronic conditions by exploring theoretical perspectives, intervention content and effectiveness.

Method: We searched MEDLINE, Cochrane, CINAHL, EMBASE, ERIC, Web of Science and PsycINFO. Standardised systematic review methods were used, and sequences informing our research question were extracted and analysed.

Parents of children with epilepsy: Characteristics associated with high and low levels of health literacy.

Parents of children with epilepsy play a key role in the management of their child's condition. Their level of health literacy (HL), which refers to their ability to seek, understand, assess, remember, and utilize health information, is essential for handling the child optimally. The aim of this study was to investigate characteristics associated with high and low levels of different dimensions of HL in parents.

Rare, epilepsy-related disorder including intellectual disability - A scoping review of caregivers' identified information needs.

Aims: The aims of this review were: (1) to obtain an overview of caregiver-reported information needs; and (2) to investigate if there are information needs that are unique for caregivers of persons with rare epilepsies.

Method: We followed the scoping review framework outlined by Arksey and O'Malley and the preferred reporting items outlined by PRISMA.

Results: Among the 17 articles that met the inclusion criteria, 5 included caregivers of persons with rare epilepsies.

Parents' experiences of videoconference as a tool for multidisciplinary information exchange for children with epilepsy and disability.

Aims And Objectives: To explore the parents' experiences with the multidisciplinary information exchange between different levels of the health- social and school services using videoconference.

Background: Children with epilepsy and disability are in need of long-term multidisciplinary help and support. The information exchange between the child's providers of support is challenging.