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ST. LOUIS, July 19, 2004 – Karen Crow knows what she’s talking about when it comes to managing the Family-Centered Care Program at St. Louis Children’s Hospital (SLCH). She spent five months in the neonatal intensive care unit at SLCH with her critically ill daughter, volunteered in the ICU and served on a parents/staff committee formed to improve the unit before being appointed the first coordinator of the program last year.
Today, Crow is responsible for implementing and evaluating health care policies that allow families to participate in the decision-making process of the patient’s daily care. In this newly created position, Crow ensures that the collaboration between caregivers and families is consistent throughout the hospital.
Crow’s responsibilities include meeting with managers to assess the family-centered care programs already in place, such as support groups. In addition, she also serves on the Family Advisory Council, which meets monthly and is composed of parents or family members of chronically ill patients.
The Family Advisory Council has had such a positive impact on the hospital culture that families are serving on other committees and task forces throughout the hospital. For example, family members have provided input into various departments regarding such issues as signage, billing, guest services and employee recognition and they are helping redesign the reception area in same-day surgery.
Crow’s position as family-centered care coordinator is rare among health care providers, she said. After attending conferences on family-centered care recently, she knows only about a dozen other people nationally in her same position.
Crow is working with each hospital unit to build on the support already in place, as well as working with clinicians to share best practices that might be suitable for more than one unit. Some examples of family-centered care at SLCH include:
- In the neonatal ICU, families, along with their primary nurses, are included in physician daily rounds and participate in the decision-making process for their children’s care plan.
- Inpatient and outpatient areas encourage hands-on participation in the child’s care to ensure that parents are comfortable in providing necessary care at home after the hospital stay.
- Families of rehabilitation patients participate in weekly meetings that include all members of the health care team, as well as the patient’s school nurse or teacher. The meetings help ensure that everyone has the same information about the patient’s future course of care and that they partner to accomplish the goals.
- Neurosurgery has established an Internet message board in which families of children with cerebral palsy share information.
- Hematology/oncology offers a school re-entry program that educates school administrators, teachers and classmates about cancer.
- Several inpatient areas have expanded visiting hours for siblings under the age of 15 years old.
- Family input was critical to The Olson Family Garden, expanded Child Life Center and Family Resource Center.
- Pediatric ICU management attended a national conference last fall on family-centered care as part of an effort to establish a structured program.
Families have an important role in guiding the hospital’s work and contribute to the hospital’s mission of doing what’s right for kids, Crow said.
St. Louis Children's Hospital has provided specialized care for children for more than 125 years. Children's Hospital is affiliated with Washington University School of Medicine, ranked the second best medical school in the country by US News & World Report. In 2003, Child magazine ranked St. Louis Children's Hospital sixth on its list of the 10 Best children's hospitals in the country, and fourth in neonatology/neonatal intensive care unit (NICU). St. Louis Children's Hospital also is a member of BJC HealthCare.
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