OBJECTIVES The onset of LGS during early childhood brings particular concerns for the child with LGS and for the parents caring for the child with the condition. LGS is a severe form of childhood epilepsy which is characterized by multiple seizures and mental deficiency. This study was conducted to explore the impact of LGS on the HRQL of the parent and the child and to develop a conceptual model. METHODS Semi-structured interviews were conducted with 40 parents of children with LGS in the US, UK, and Italy. Given the fact that it was not possible to interview the children, parents were asked to provide a report on their perceptions of the HRQL of their child in addition to describing the impact on their own HRQL. Thematic analysis using Atlas TI was conducted to develop themes relating to the impact on HRQL. The themes were organized into a conceptual model of the impact of LGS on the HRQL of the parent and the child. RESULTS Parents reported extensive difficulties in every aspect of their own lives. Major themes included burden of care on work and social activities, stigma, frustration, anxiety and other physical issues (including sleep disturbance), as well as concerns about the future for their child. With respect to the HRQL of the child, the parents reported that the physical functioning of the child is affected, particularly in relation to mobility difficulties. LGS has a significant affect on a child's cognitive skills with some of the children not being able to talk. In addition, children with LGS tend to have little or no social skills and find interacting with others difficult. CONCLUSIONS LGS has a substantial negative effect on the HRQL of parents of a child with LGS as well as on the HRQL of the child him/herself.