UPMC Children’s Heart Institute Family Advisory Committee Advances Family-Centered Cardiac Care

The Heart Institute at UPMC Children’s Hospital of Pittsburgh has created a Family Advisory Committee to help guide care priorities and resource development across the full trajectory of pediatric heart care, from fetal diagnosis to long-term outpatient follow-up.

The initiative is led by Shannon Solt, DO, FAAP, assistant professor of Pediatrics and Critical Care Medicine. Dr. Solt is pediatric cardiac intensivist in the Cardiac Intensive Care Unit (CICU) and the CICU lead for the Cardiac Neurodevelopmental Outcomes Program.

The Family Advisory Committee (FAC) was launched in 2023 to provide a structured and collaborative space for families and staff to work together on issues that affect the patient and family experience at the Heart Institute at UPMC Children’s. In its third year of operation and expansion, the FAC includes returning and new family participants and staff representatives.

“This started as a response to a very specific question: How do families want to receive information about their care team?” says Dr. Solt. “But when I looked into it, I realized there was no formal way to gather family feedback specific to pediatric cardiac care. That’s where the idea for this committee came from.”

Program Development and Structure

Dr. Solt began developing the concept shortly after joining the Heart Institute at UPMC Children’s in 2021. Drawing on models from other institutions and internal advisory groups, including the UPMC Newborn Medicine Program’s NICU Family Advisory Council, she proposed a Heart Institute–specific version that could span the full range of disciplines, settings, and diagnoses that the Heart Institute covers.

The first iteration of the Family Advisory Committee launched with 11 families and 16 staff members. For the current year (2025), participation has increased to 15 families. Staff membership has remained relatively consistent over time, with representation from nursing, fetal cardiology, outpatient cardiology, the CICU, cardiothoracic surgery, interventional cardiology, child life, social work, palliative care, neurodevelopmental psychology and psychiatry, the Heart Institute’s quality improvement team, and the UPMC Children’s Hospital Foundation.

Family Advisory Committee meetings are held quarterly through a virtual platform. Attendance is coordinated to accommodate family availability, and while staff may occasionally bring specific questions or projects for feedback, the agenda is primarily shaped by the family participants.

“We deliberately included staff from a wide range of specialties,” Dr. Solt says. “It makes it easier to ensure that when families raise issues, those concerns actually reach the right part of the Heart Institute directly.”

Participation Guidelines and Diversity Efforts

Families are eligible to participate in the FAC beginning one year after their child’s initial admission to the Heart Institute. This gap is to allow time for recovery and adjustment to having a child diagnosed with a serious heart condition. Family members can serve on the FAC for up to five years. New participants are identified through direct outreach and self-referral, with growing awareness about the committee generating interest from families across UPMC Children’s wide operating geography.

The Heart Institute at UPMC Children’s also is working to ensure the committee benefits from a diversity of viewpoints and experiences. Current participants include families of children with a wide range of cardiac conditions, including hypoplastic left heart syndrome, coarctation of the aorta, heterotaxy, and those living in a post-transplant world, as well as families from rural communities, the Mennonite community, and bilingual households.

“We want the Family Advisory Committee to reflect the full spectrum of families we serve,” Dr. Solt says. “Every diagnosis, every background, every language brings different challenges, and we need to hear from all of them to help us create more inclusive and family-centric care.”

Family-Led Projects and Resource Development

Each year, the Family Advisory Committee aims to support one to two new projects driven by family input. Completed and ongoing initiatives cover a range of practical, emotional, and system-level needs.

One of the first projects was the creation of an emergency access basket for families facing unexpected or extended hospitalizations. Stocked with items like phone chargers, toiletries, socks, and other daily essentials, these items are available to families who arrive at the Heart Institute without time to prepare for a longer stay or who did not expect an extended stay. Funding for the baskets was secured through a small grant.

Another early initiative was the development of a mental health flyer outlining available services and supports from social work, psychology, neurodevelopment, and child life.

“We heard from families that mental health was an area of concern, not just for the patient, but for parents and siblings too,” Dr. Solt says. “We wanted to make sure they knew who they could turn to when a need arises.”

The committee also helped launch the Heartbeat Parent Café, a weekly, drop-in gathering with coffee and snacks designed to promote connection between families. The sessions are lightly facilitated by psychology staff to maintain a safe and supportive atmosphere.

Addressing Complexity Outside the Hospital

The FAC also has focused on improving care transitions and support for nonlocal families, who may face logistical challenges of in-person care at UPMC Children’s that staff are not always aware of. For example, families from rural areas reported difficulties filling prescriptions, particularly compounded medications, after discharge that sometimes require visits to multiple pharmacies.

Those conversations led to improved coordination between the Heart Institute inpatient teams and outpatient pharmacy services, including better utilization of Half Pint, UPMC Children’s in-house prescription management program.

“There are things we don’t always think about unless we’ve lived them,” Dr. Solt says. “That is why the families’ perspective is so critical.”

Another resource in development is a Congenital Heart Disease Family Resource Book, which will function as an orientation tool for patients and families facing a new diagnosis and those traveling from outside the Pittsburgh area. Content will include introductions to care team roles, explanations of commonly used terminology (e.g., high-flow nasal cannula, NG tube), and information about nonhospital services like laundry facilities, workspace access, and nearby food options.

The guide also will include sections on caregiver self-care needs for things like where to go for a haircut or how to keep siblings engaged during extended hospital visits.

Nutrition Support and Maternal Health

Based on feedback from families with children who have undergone a Fontan procedure, the Heart Institute developed a low-fat diet cookbook tailored to children with hypoplastic left heart syndrome. The cookbook was assembled by one of the Heart Institute’s advanced practice providers and a nutritionist with contributions from families. The book includes recipes, store-bought options, and guidance for accessing affordable nutrition.

More recently, the Family Advisory Committee has turned its attention to the domain of postpartum health care. Several mothers who participate shared that they had skipped their own follow-up appointments because they did not want to leave their child’s bedside. The team is now conducting a survey to explore the extent of this issue and identify ways to reduce barriers to maternal care.

“Maternal health and maternal mental health are very much tied to child development, especially in the context of neurodevelopment and extended stays in the CICU or hospital,” Dr. Solt says. “If we want to support our patients, we have to support their parents, too.”

Creating Institutional Pathways for Family Engagement

As the work and ideas of the Family Advisory Committee become more embedded in the Heart Institute’s daily operations and culture, its role as a feedback and design partner will continue to evolve and expand.

“More and more teams are approaching the committee to ask for family input before they roll out a new initiative,” Dr. Solt says. “That’s exactly what we hoped for, to make this project part of how we plan and not just how we respond.”

Learn More About the Heart Institute at UPMC Children’s Hospital of Pittsburgh.