RESUMO
BACKGROUND: C1INH-deficiency hereditary angioedema (HAE) is characterized by recurrent episodes of potentially severe oedema. Icatibant for SC injection will soon be approved for use in children and it is necessary to train parents in recognising severe episodes of AOH and in the technique for injection of icatibant. Simulation in healthcare (SH) is a set of educational methods for improving skills in a safe environment. We wished to assess the feasibility of a therapeutic training session (TTS) involving scripted scenarios for the parents of children with HAE. PATIENTS AND METHODS: The TTS session included pre- and post-training testing on AOH, two scenarios (calling emergency services for lingual AO; gastrointestinal AO) involving actors and a volunteer parent, a workshop for learning the SC injection technique, and a satisfaction questionnaire. We analysed the answers on the questionnaire and noted down parents' verbatim observations during debriefing sessions. RESULTS: Eight parents from 5 families took part in this session. Parents rated their overall satisfaction as 9.3/10. The parents commented that during the simulations, they felt "in the thick of it" and that they "experienced stress while viewing the scenes", thus attesting to the realism and relevance of the simulated scenarios. DISCUSSION: This session met the parents' expectations in terms of being able to cope and having adequate know-how, based on both the simulations and the level of knowledge acquired. The main limitation lay in the parents' difficulty in confronting certain situations reminiscent of traumatic past experiences. TTS shares many common features with SH for the parents of sick children. The place of the latter in TTS must be evaluated.