515 - Parental Perspectives on Communication with Their Child's Clinical Team in the Cardiac Intensive Care Unit

Poster Number: 515
Publication Number: 515.140

Jennifer K. Walter, University of Pennsylvania School of Medicine, Philadelphia, PA, United States; Reyneris J. Robles, Children Hospital of Philadelphia, Philadelphia, PA, United States; Hannah Girgis, Childrens Hospital of Philadelphia, Medford, NJ, United States; Douglas L. Hill, The Children's Hospital of Philadelphia, Philadelphia, PA, United States

Background: Parents of children hospitalized in cardiac intensive care unit (CICU) often have overly optimistic perceptions of their child’s prognosis pointing to inadequate communication with their child’s providers. Little is known about parental preferences for communication with their child’s CICU providers.

Objective: To describe parents’ perspective on optimal preparation for family meetings and communication preferences in the CICU.

Design/Methods: Semi-structured interviews were conducted with parents of children who were in the CICU for at least 7 days. Parents were asked about previous participation in a family meeting; preparation for the meeting; and preferences and challenges in communication with their child’s healthcare team. Interviews were recorded, transcribed verbatim, and analyzed using inductive thematic analysis by 2 coders in Nvivo. 

Results: Our sample included 22 parents (68% mothers; 78% White; 14% Hispanic) of 18 children admitted to the CICU an average of 55 (SD 46) days at time of interview. Family meetings occurred for (78%) of families.
 
Key themes from the interviews fell within 5 domains: 1) Experience when told about family meeting: “I was so anxious, because I thought I was going to get bombarded with something that maybe I didn’t know.” 2) Meeting Preparation Preferences: “Maybe to say [do you] have any specific questions that maybe you have thought of … that maybe I wasn’t comfortable speaking [about] at the bedside.”; 3) Facilitators: Being kept in the loop “Parents want timelines. Like sitting here every day, not knowing... Well, am I going to be discharged next week?”; 4) Facilitators: Eliciting Questions from parents “I feel like they are very good at asking, 'do you have any questions?  Are you sure?  Is there anything else you need to know or you want to know?'” 5) Barriers: Being ignored: “I said for like three days straight that my daughter was not acting the way she normally does… and I just kept getting told, oh, this is normal 3-year old behavior…then they found out she did in fact have something wrong and had an infection and had to get completely reopened again.”Conclusion(s): In this qualitative study, parents reported wanting more preparation before family meetings, appreciated being updated frequently and having questions elicited, and were frustrated when their input was ignored or dismissed. Future research should examine tools to best prepare families for meetings to ensure preferences are met.