What do we talk about? Exploring perspectives and values in pediatric pre-tracheostomy conversations with caregivers and staff: a qualitative study

Diyva Chhabra – University of Rochester; Margo McKenna – University of Rochester; Denishea Ortiz – Rochester Area Community Foundation; Kathryn Palumbo – University of Rochester; Jan Schriefer – University of Rochester

Abstract: A tracheostomy may be necessary to prolong life in medically complex children. This intervention involves a unique and complicated decision-making process. In pediatrics, families have multiple discussions surrounding tracheostomy which occur at varying times with differing information. We sought to improve the conversation regarding pediatric tracheostomy between families and the medical team by performing a needs assessment to direct a consistent “Pre-Tracheostomy Pathway.” Utilizing the biopsychosocial (BPS) approach in this work, we aimed to systematically consider the layered interactions between medical complexity, psychological and social well-being, and the goals and values of the family. Anonymous surveys were distributed to medical staff at a large academic medical center and to patient families who had experienced the tracheostomy decision making process from 2015-2020. Staff were queried on how they approach the tracheostomy discussion. Families were asked about the overall experience pursuing tracheostomy. The BPS model was used to interpret responses and codify themes from the respective groups. Overall, tracheostomy was linked to improvement in quality of life (experienced and perceived), highlighted the need for support at home, and a change in daily life. Staff expressed the importance of families speaking with other tracheostomy families prior to the tracheostomy decision, yet less than half of families did this. Staff thought tracheostomy created challenges for family life, while families viewed tracheostomy as the start to the next chapter in life. Applying the BPS model to the pre-tracheostomy discussion reveals the overlap of biological, psychological and social factors influencing the decision to pursue tracheostomy.

Keywords: pediatric tracheostomy, value based decision making, biopsychosocial model