Lisa T Wigfall, Andrea H Tanner
Health Literacy and Health-Care Engagement as Predictors of Shared Decision-Making Among Adult Information Seekers in the USA: a Secondary Data Analysis of the Health Information National Trends Survey
Journal of cancer education : the official journal of the American Association for Cancer Education
background aim early onset epilepsy neurological condition significant developmental consequences presents affected children families challenges pervade many aspects family life whilst concerns parents impact quality life well documented qualitative research little emphasis placed context early onset implications concerns research priority setting aimed explore parental perspectives regarding concerns impact early onset epilepsy child family identify priorities future paediatric epilepsy research methods brain development early epilepsy parent priorities beepp project employed mixed methods approach collect information parents experience child diagnosed early onset epilepsy 36 months old aged 16 years old parents completed online survey n 15 followed focus group n 5 explore main concerns regarding early onset epilepsy impact family life research priorities results thematic analysis focus group data generated eight themes related concerns parents impact family research priorities three main concerns identified expected trajectory childs development lack seizure control following diagnosis adverse behavioural side effects medication within family life early onset epilepsy impact sibling autonomy psychosocial adaptation poorer parental wellbeing restricted social personal activities need clearer information regarding childs developmental trajectory managing side effects medication interactions behaviour time topics priority future epilepsy research interpretation impact early onset epilepsy family pervasive requires provision appropriate healthcare serviceled support families improve quality life childrens adjustment epilepsy regular monitoring concerns parents impact diagnosis would beneficial addressing epilepsyrelated psychosocial needs wider family throughout childs development implications future research priority setting regards improved cliniciantoparent information sharing managing behavioural side effects medication discussed