Problems that mothers’ with epilepsy experience when caring for their children

SummaryWomen with epilepsy who were service users of Epilepsy Action in the United Kingdom (UK) completed a questionnaire on the risks of caring for their baby and whether they were provided with useful information on fulfilling their caring role (Epilepsy Action is the trading name of the British Epilepsy Association a major UK charity for those with epilepsy).The cohort of 84 all reported some problems. The following were rated as being the most problematic; caring for their baby outside the home and bathing, whereas breastfeeding was rated as much less problematic. Some problems were rated as severe, which meant some babies were put at undue risk.Approximately 50% had been provided with information about caring and managing risk. Eighty-six percent found this information useful.The main conclusion is that more extensive, well-planned research is needed on this topic. There is virtually nothing in the academic literature to guide practice and this is needed. Present guidelines tend only to cover what the women rate as less problematic, e.g. breastfeeding, whereas what they rate highly problematic is often not covered. This needs attention in updates.