770 - Parental Decision-Making for Tracheostomy and Long-Term Ventilation for Children with Severe Neurologic Impairment
Sunday, April 30, 2023
3:30 PM – 6:00 PM ET
Poster Number: 770 Publication Number: 770.306
William Sveen, University of Minnesota Masonic Children's Hospital, Minneapolis, MN, United States; Ellen A.. Lipstein, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Lesley Doughty, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Armand H. Matheny. Antommaria, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States; Allison Parsons, Rescue Agency, Cedar Park, TX, United States
Assistant Professor University of Minnesota Masonic Children's Hospital Minneapolis, Minnesota, United States
Background: Children with severe neurologic impairment (SNI) and chronic respiratory failure often require tracheostomies to facilitate long-term or indefinite mechanical ventilation (trach-vent). Understanding how parents make trach-vent decisions, including the factors that they consider, may help providers better facilitate decision-making that is concordant with parents’ goals. Objective: Describe parents’ decision-making regarding trach-vent for their children with SNI including perceived advantages, disadvantages, and alternatives. Design/Methods: The authors conducted prospective, semi-structured interviews with parents considering trach-vent for their children with SNI at a quaternary care children’s hospital. Participants were asked to describe their decision-making process, specifically advantages, disadvantages, alternatives, and resources. Interviews were audio recorded and transcribed. The first 5 transcripts were open coded using ATLAS.ti to develop a codebook using thematic analysis. The remaining transcripts were coded independently by two coders. Codes were compared and reconciled to arrive at consensus. Results: Fourteen parents of 12 children with SNI and chronic respiratory failure participated. Eleven children subsequently received trach-vent. All parents described significant advantages and disadvantages to trach-vent. Commonly expressed advantages included improved health or life expectancy, increased quality of life for their child and/or themselves, increased time at home, and financial benefits. Many parents, for example, commented on the potential benefit of more clearly seeing their child’s face.Commonly expressed disadvantages included medical complications, decreased quality of life for their child and/or themselves, delayed hospital discharge, need for home nursing and long-term care, increased equipment, and financial burdens. Some parents did not perceive any viable alternatives to trach-vent. Parents trusted and appreciated recommendations from physicians who respected their values and ignored recommendations from physicians who did not.They drew on resources including the internet and support groups.
Conclusion(s): Although parents considering trach-vent for their children with SNI describe a decision-making process with clearly articulated advantages and disadvantages, they often do not see a viable alternative to trach-vent. Physicians should elicit parents’ values and ask permission to provide a recommendation concordant with the parents’ values.