Parental Perspectives on Life-Altering News in Emergency Settings: A Qualitative Evaluation.

INTRODUCTION: Delivering life-altering news is a difficult task that is frequently the responsibility of emergency physicians. However, the existing frameworks for guiding such interactions fail to address the physician-parent-patient dynamic of pediatric emergency encounters. To date, no study has investigated the parental perspective, limiting the ability to provide evidence-based recommendations. This study describes how parents experience receiving life-altering news about their child in emergency settings.

METHODS: This qualitative study used virtual asynchronous focus groups. Through purposeful sampling of virtual support and advocacy groups, we recruited parents of children diagnosed with either malignancy or type 1 diabetes in an emergency department. Participants were then assigned to private Facebook groups established solely for this study. Questions were posted to these groups over the course of 5 days. At their convenience, participants could post responses, replies, or new questions. Three members of the research team performed thematic analysis and used team consensus to ensure validity.

RESULTS: Four focus groups were conducted with a total of 28 participants. Parents described their experiences receiving life-altering news as a process with 4 primary emergent themes: lens through which they view the experience, the ED encounter, the immediate response, and the long-term impact. Each parent entered into the ED encounter with a unique collection of personal experiences, circumstances, and knowledge. These factors shaped the lens through which they perceived the events of the ED encounter. Ultimately, this determined participants' response to the life-altering news, leading to many long-term impacts on the various dynamics within each parent's life.

CONCLUSIONS: The words used to disclose life-altering news are only a small piece of the experience for parents. Personal lenses changed how encounters were perceived, resulting in variable and long-lasting implications. We recommend the following framework for providers: understand the lens, control encounters, manage responses, and respect long-term impacts.