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. This study explored parents' experiences of their caregiver responsibility and the development of their HL in relation to caring for their child with epilepsy. Ten parents of children under 12 years of age with epilepsy were purposedly sampled and interviewed individually, using semi-structured interviews. The interviews were analyzed using qualitative content analysis, in line with Graneheim & Lundman. The analyses resulted in three themes, each comprising two sub-themes. The themes were: (1) Alone with the responsibility, (2) The combat for information and support, and (3) Developing vigilance and distrust in system competence. Lack of flexibility in healthcare services, insufficient multidisciplinary collaboration, and unclear treatment provider responsibility made the parents feel alone in the caregiver's responsibility. Poor local provider competence related to childhood epilepsy was a barrier to developing sufficient HL. A trusting relationship with professionals and timely access to competent health services were facilitators for developing HL. Higher HL made the parents more critical for the healthcare services, which triggered vigilance and reduced their trust in the professionals' information. For the parents, developing and maintaining HL was a continuous emotional, cognitive, and social process. Health information and care support need to be adjusted to the severity of the child's condition, the resources are available, and the parent's HL. The results of this study may contribute to the development of future interventions for strengthening parental HL in the childhood epilepsy context.

"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. The study includes a descriptive summary of the included papers. RESULTS: We included 39 unique interventions, with diabetes and heart disease as the most targeted chronic conditions. Fifty-four percent of papers included a definition of HL, but the studies showed significant heterogeneity of theoretical underpinnings, modes, measures and content. We identified 23 HL measures, mostly assessing functional HL. The HL interventions were often more complex than the measures indicated. A significant change in HL was found in 28 studies. Study quality was generally poor. CONCLUSIONS: Interventions optimizing HL appear important to improve health outcomes in chronic conditions. To ensure cumulative knowledge development of this field we need theory-based interventions, consistency in methods and more tailored and comprehensive measures to capture the interventions' complexity. PRACTICE IMPLICATIONS: A more valid understanding of HL interventions and measurements is needed to reach an agreed understanding of their components and intentions.

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. HL was assessed with the multidimensional Health Literacy Questionnaire (parents' version) and the electronic Health Literacy Scale, using data from a cohort of 254 parents of children <12 years. Bivariate correlation and multiple hierarchal linear regression (STATA version 16 SE) were used to investigate variables associated with HL. Self-efficacy (St. ß = 0.14-0.34) was the only variable that predicted higher scores on every HL scale. Being older than 35 years (St. ß = 0.18-0.21), level of education (St. ß = 0.16-0.27), and the child having a coordinator of services (St. ß = 0.16-0.28) were associated with higher scores, while sick leave due to the child's epilepsy (St. ß = -0.13 to -0.16), child comorbidities (St. ß = -0.15 to -0.19), and higher levels of mental distress (St. ß = -0.13 to -0.19) were associated with lower scores in several of the different HL dimensions. A total of 44.8% of the parents scored over the cutoff (≥1.85) predicting a mental disorder on the Hopkins symptom checklist. This is the first study to investigate multidimensional parental HL in a childhood epilepsy context. Our results highlight the need to investigate multiple variables, especially mental distress, to determine characteristics that may predict low parental HL. Further qualitative studies are needed to explore the underlying reasons for the parents' HL scores and to develop inventions tailored to meet different HL needs.