Aim: Meeting children's needs when communicating an epilepsy diagnosis can have a large impact on their treatment. We investigated children's experiences and wishes concerning their first conversation about epilepsy.
Methods: This prospective study was performed in the neuropaediatric departments of two German university hospitals from 2 October 2018 to 12 April 2019. The semi-structured interview contained open questions, and multiple answers were allowed.
Results: We interviewed 101 patients (57 male) aged 6-17 (median 11) years and asked them to put themselves in the place of a physician delivering an epilepsy diagnosis. They said they would be careful and friendly and consider the children's feelings (29%), give them detailed information about their condition (29%) and reduce their fears and offer hope (26%). They would tell them the importance of always taking their medication and explain why (25%), make sure that the conversation took place in a comfortable setting (21%), explain any safety precautions (19%), keep the conversation straightforward and provide examples (16%).
Conclusion: Children with epilepsy provided concrete recommendations for physicians delivering an epilepsy diagnosis, with regard to the ideal setting, important topics and optimal communication. The recommendations could help physicians meet children's needs.
Keywords: children; communication; epilepsy; fears; recommendations.
© 2020 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica.