345 - Parental involvement in liberation from respiratory support for infants with bronchopulmonary dysplasia

Publication Number: 2334.345

Mia DiCara, Ann & Robert H. Lurie Children's Hospital of Chicago, Long Grove, IL, United States; Lucy Rubin, Endeavor Health Evanston Hospital, Chicago, IL, United States; Joanne Lagatta, Medical College of Wisconsin, Milwaukee, WI, United States; Kelly Michelson, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Karna Murthy, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Nicolas F. M.. Porta, Northwestern University/Lurie Children's Hospital, Chicago, IL, United States; Matthew Kielt, Nationwide Children's Hospital, Columbus, OH, United States; Shilpa Vyas-Read, Children's Healthcare of Atlanta, Atlanta, GA, United States

Background: Practice variation exists in liberation from respiratory support (LRS) for infants with severe bronchopulmonary dysplasia (sBPD). Our prior work showed that time-to-LRS varied up to 10 weeks between Children's Hospitals Neonatal Consortium (CHNC) centers, independent of patient-level characteristics. Through focus groups, we identified differences in care philosophy and unit culture between sites with longer versus shorter times-to-LRS. This secondary analysis characterizes clinicians' reports of parental engagement in care and decision-making in infants with sBPD that may influence time-to-LRS.

Objective: To characterize clinicians' perceptions of parental engagement in care decisions for infants with sBPD at NICUs with longer and shorter times-to-LRS.

Design/Methods: We conducted virtual focus groups with team members at CHNC centers with longer and shorter times-to-LRS. Each included multidisciplinary professionals caring for infants with sBPD. Teams were asked open-ended questions about parental involvement in decisions regarding timing of extubation and weaning non-invasive respiratory support. Sessions were recorded, de-identified and analyzed by two independent coders using inductive grounded theory.

Results: Focus groups were completed with eleven institutional teams (6 longer time-to-LRS; 5 shorter). Four themes of parental involvement emerged- participation in rounds, presence during weans/extubations, physician attitude, and parental influence in decision-making. Table 1 shows representative quotes for each theme. Of note, only 3 of the 11 sites demonstrated high parental engagement- defined by comments indicating families were empowered to engage in respiratory weaning decisions. All were from shorter time-to-LRS sites. Table 2 presents representative quotes contrasting high versus low parental engagement.

Conclusion(s): In this secondary analysis of sites with high versus low time-to-LRS, we identified four themes describing variation in family involvement in care and decision making related to respiratory support management. Notably, the 3 sites with high parental engagement in decision-making were those from shorter time-to-LRS sites, raising the question of whether parental involvement in shared decision-making is an important factor in time-to-LRS for infants with sBPD. This secondary analysis identified themes that merit further investigation in a study dedicated to understanding the impact of parental involvement in the care and outcomes of patients with sBPD.

Table 1. Identified themes regarding parental involvement in the management of infants with BPD
Four themes surrounding parental involvement were identified from multidisciplinary teams during focus group interviews. Themes address parental involvement in the care and decision-making for infants with sBPD. Definitions for each theme are included in the second row of this table.

Table 2. Exemplar quotes from longer and shorter time-to-LRS sites regarding family engagement in decision-making.
 Quotes that discussed empowering families and a high degree of family engagement were contrasted with quotations that mention less engagement. Three sites were noted to have high parental engagement; all three sites were short-to-LRS sites.