Improving Family Meetings in the Pediatric Cardiac Intensive Care Unit

Context:

A large proportion of children with advanced heart disease (AHD) die in the pediatric cardiac
intensive care unit (CICU), where parents describe obtaining a realistic understanding that
their child had a life-limiting disease only 2 days prior to death. Delayed or inadequate
communication within teams or with families may contribute to this lack of understanding (as
shown in children with other serious illnesses), while interactions with pediatric palliative
care specialists (PPCS) have been shown to improve communication and understanding of
prognosis. The limited number of PPCS, however, means that all clinicians in the CICU must
have the skills to support parental decision-making, including giving bad news and eliciting
parental goals for their child.

Objectives:

1. To develop a communication skills training (CST) program for interprofessional teams in
the pediatric CICU via a co-design process.

2. To evaluate CICU clinicians' perceived feasibility and acceptability of the CST.

3. To evaluate CST impact on communication skills and team function in actual family
meetings.

4. To describe and evaluate parents' communication challenges in the CICU and their
satisfaction with communication.

Study Design:

Prospective cohort study with pre and post assessments around an intervention.

Setting/Participants:

Clinicians at the Children's Hospital of Philadelphia (CHOP) and parents of children
previously hospitalized in the ICU will be invited to participate in the co-design portion of
the study to develop the team and family based intervention. A separate group of volunteer
attending intensivists, cardiologists, cardiac surgeons, front line clinicians, bedside
nurses, and social workers from the pediatric CICU at the Children's Hospital of Philadelphia
(CHOP) will undergo the intervention and participate in observed family meetings before and
after the intervention. Other clinicians who are participating in an observed family meeting
will also be enrolled. Parents or legal guardians and their children in the CICU who have
been there for at least 7 days and are expected to stay at least another 7 days will also be
consented and enrolled.

Study Interventions and Measures:

Intervention:

The intervention includes both an interprofessional team training that will include practice
in communication skills of giving bad news and building team collaboration and a family
oriented intervention to prepare them for family meetings.

Measures:

The Co-design process to develop the intervention will have focus groups to evaluate the
interventions' content and perceived feasibility.

The impact of the intervention on CICU clinicians' perceived usefulness and satisfaction with
the training will be measured with post-intervention and one month follow-up surveys.

For the actual family meetings, assessment of the impact of the intervention on communication
and team function in actual family meetings pre and post-intervention will be done by coding
audio recordings with validated tools and qualitative coding of content. Collaboration will
be measured using the amount of time different members of different disciplines speak, and
team member perception and satisfaction with collaboration will be measured using a validated
tool.

Parents' experiences in family meetings and perspectives on communication with the clinical
team will be measured with a pre-intervention survey measuring parental mood, affect, and
satisfaction with communication or with semi-structured interview.

Inclusion Criteria:

Participants in Co-design:

- Clinicians including attending physicians, front line clinicians (fellows, nurse
practitioners, or physician assistants), bedside nurses, and social workers working at CHOP
or parents of children previously hospitalized in an ICU at CHOP.

Clinicians Participating in Intervention:

- Pediatric CICU clinicians (attending intensivists, cardiologists, cardiac surgeons, front
line clinicians, bedside nurses, and social workers) at CHOP who volunteer to undergo
communication skills training.

Clinicians Not Participating in Intervention:

- Clinicians who plan to participate in family meetings in the pediatric CICU that will be
observed by the research team.

Parent-patient Dyads Participating in the Survey or Interview:

- Parent must be the legal decision maker of a patient who has been admitted to the CHOP
CICU for at least 7 days.

- Patient has been admitted to the CICU at CHOP for ≥7 days following onset of study and
the medical team believes the patient will remain in the CICU for at least 7 more
days.

- Parent/guardian ≥ 18 years old.

- Child < 18 years old at time of enrollment.

- Parent/guardian is English-speaking.

- Parent/guardian has no cognitive impairments that prevent them from being a surrogate
decision maker.

Exclusion Criteria:

Participants in Co-design:

- None.

Clinicians Participating in Intervention:

- Clinicians who will not participate in CHOP's CICU chronic care meeting in the following
year.

Clinicians Not Participating in Intervention:

- None.

Parent-patient Dyads Participating in the Survey or Interview:

- Parent is not the legal decision maker of a patient who has been admitted to the CHOP
CICU for at least 7 days.

- The medical team does not believe the patient will remain in the CICU for at least 7
more days.

- Parent/guardian < 18 years old.

- Child is ≥ 18 years old at time of enrollment.

- Parent/guardian is not English-speaking.

- Parent/guardian has cognitive impairments that prevent them from being a surrogate
decision maker.