RESUMEN
INTRODUCTION: Learners have repeatedly expressed a desire for more structured training in communicating with families, especially when sharing life-altering information and breaking bad news. Concurrently, parents have indicated that pediatricians could conduct difficult conversations with greater skill. Based on local needs assessments and available pediatric literature, this guide presents didactic materials and a workshop-style, case-based, longitudinal approach for teaching communication skills to learners in pediatrics. METHODS: The customizable guide can be implemented as a 1-hour didactic presentation, a 1- to 3-hour workshop, or an integrated longitudinal curriculum. Unlike other available resources for breaking bad news, this guide is specifically designed for pediatrics and uses evidence-based communication guidelines developed for pediatric settings. The guidelines are modified from the adult-centered SPIKES (setting, perception, involvement, knowledge, emotions, summary) approach. The material was created by clinicians, educators, and parents of pediatric patients. In addition to video-based didactic materials and pediatric case scenarios, the guide includes materials for assessment, evaluation, and personal reflection. RESULTS: The modified SPIKES approach and didactic portion of this resource were validated as an initial training tool, yielding significant improvements in self-efficacy of pediatric providers and learners. Evaluations of the role-playing components provided by pediatric residents and fellows have been positive for the format and value of the learning experience. Participants reported a particular benefit from the inclusion of parent perspectives. DISCUSSION: Without a formal communication curriculum, learners must rely on chance observation of life-altering conversations during clinical rotations. This guide provides pediatric educators with structured, evidence-based materials to teach advanced communication skills.
RESUMEN
Multifocal lymphangioendotheliomatosis with thrombocytopenia is characterized by vascular skin and gastrointestinal (GI) tract lesions, thrombocytopenia, and GI bleeding. The first patient had scattered red macules and subcutaneous nodules on the skin with involvement of the lungs, liver, omentum, and right kidney. At 10 months of age he continues to have severe GI bleeding. The second patient had innumerable vascular plaques on the skin plus muscle, bone, lung, liver, and brain involvement. She died from respiratory failure at 8 months of age due to brainstem involvement. Both patients required aggressive management of GI bleeding, but had quite different skin findings and long-term outcomes.