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Parent communication with care teams and preparation for family meetings in the paediatric cardiac ICU: a qualitative study

Published online by Cambridge University Press:  25 May 2023

Colette Gramszlo Open the ORCID record for Colette Gramszlo [Opens in a new window] ,
Hannah Girgis ,
Douglas Hill  and
Jennifer K. Walter Open the ORCID record for Jennifer K. Walter [Opens in a new window]
Colette Gramszlo*
Affiliation:
Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Hannah Girgis
Affiliation:
Northeast Ohio Medical School, Rootstown, OH, USA
Douglas Hill
Affiliation:
Pediatric Advanced Care Team, Children’s Hospital of Philadelphia, Philadelphia, PA, USA Center for Clinical Futures, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
Jennifer K. Walter
Affiliation:
Pediatric Advanced Care Team, Children’s Hospital of Philadelphia, Philadelphia, PA, USA Center for Clinical Futures, Children’s Hospital of Philadelphia, Philadelphia, PA, USA
*
Corresponding author: C. Gramszlo; Email: gramszloc@chop.edu
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Abstract

Objective:

The paediatric cardiac ICU presents unique challenges to optimal communication practices, which may impact participation in medical decision-making and long-term psychosocial outcomes for families. This study characterised parent perceptions of (1) team practices that impeded or facilitated communication and (2) preparation for family meetings with interprofessional care teams during extended cardiac ICU admissions.

Methods:

A purposive sample of parents of children admitted to the cardiac ICU was selected to participate in interviews about their communication experiences. Data were analysed using a grounded theory approach.

Results:

Twenty-three parents of 18 patients participated with an average length of stay of 55 days at the time of interview. Team practices that impeded communication included inaccurate/incomplete communication, inconsistent within team communication/coordination, and feeling overwhelmed by too many team members/questions. Team practices that facilitated communication included valuing parent preferences, provider continuity, explaining jargon, and eliciting questions. Preparation for family meetings included team practices, parental preferences, and experiences when learning about family meetings (including apprehension about meetings). Family meetings were described as valued opportunities to improve communication.

Conclusion:

Communication with medical teams represents a modifiable determinant of long-term outcomes for families of children in the cardiac ICU. When parents are included as valued members of their child’s care team, they are more likely to feel a sense of control over their child’s outcomes, even in the face of prognostic uncertainty. Family meetings represent an important opportunity to repair fractures in trust between families and care teams and overcome barriers to communication between parties.

Keywords

Team communicationcardiac ICUpaediatricspsychosocial stress
Type
Original Article
Information
Cardiology in the Young , Volume 34 , Issue 1 , January 2024 , pp. 113 - 119
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Copyright
© The Author(s), 2023. Published by Cambridge University Press

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