Sarah Santos, mother of an MGHfC patient, partners with the Family Advisory Council to create an educational document informing patients and families about their role during the medical team’s morning rounds.
Mom Empowers Families to Understand Rounds
Sarah Santos and Harrison Santos, 3, at an apple orchard.
Sarah Santos and her three-year-old son, Harrison, are well acquainted with MassGeneral Hospital for Children (MGHfC). Harrison, who has been admitted to MGHfC over 25 times, does not have a unifying diagnosis, but does have a complex medical history including airway, gastro-intestinal, immunological and pulmonary issues similar to someone with cystic fibrosis. His condition has brought him and his mom from their home in Westford, MA to MGHfC two to three times per month ever since Harrison was three weeks old. As a regular hospital visitor, Santos has grown accustomed to MGHfC culture and procedures, but throughout the many visits, there was one aspect of her hospital stays that she always struggled to understand: rounds.
Every morning between 9 am and 12 pm, Harrison’s medical care team came into his room to evaluate him and make a plan for the rest of the day. Although she welcomed the team, Santos often found herself unsure of her role during rounds. Could she ask questions? Why did rounds happen? What was the goal of the morning visits? Santos felt compelled to educate herself and other families about rounds and to actively participate in her son’s health care. After joining the MGHfC Family Advisory Council (FAC) last year, she teamed with the group to develop an educational document that would help patients and families understand the ins and outs of morning rounds.
“I didn’t know what my place was during rounds, and I thought if I’m here all of the time and don’t know, how are other parents who are here less frequently going to know?” says Santos. “The document helps parents realize that rounds are an opportunity to express concerns. Parents should never be afraid to speak up.”
Entitled "Please Join Us for Family Centered Rounds," the document was developed by a task force, including hospitalists Anne Kao, MD, and Kerstin Zanger, MD, Inpatient Quality and Safety director Esther Israel, MD, residents Julie Von Oettingen, MD, and Sarabeth Broder-Finger, MD, Rose McClory, RN, FAC co-chair Sandy Clancy, PhD, and parents Sarah Santos, Lisa Cimino and Meagan Taylor. The document’s message includes details about the goals of family centered rounds, what rounds are, when to expect the care team, and how families can participate. The document has been well received by families since its launch, according to residents.
“The document is so important because it is an explicit invitation to family members to partner in their child’s care with the medical team,” says Clancy. “It is wonderful that Sarah helped to develop the document because it is an example of a parent using her experience to enhance care for all patients and families. This is quality improvement initiated by a family’s experience.”
As part of the document’s development process, Santos presented with Anne Kao, MD, at the joint pediatric and adult FAC dinner this year, explaining the evolution, positives and challenges of family centered rounds. From a parent’s perspective, family centered rounds look different than a practitioner’s perspective, Santos explained.
“It is empowering to take the struggles I’ve endured here as a parent of a patient and give back in a tangible way on the FAC,” Santos says. “I would encourage other parents to join. It’s a great opportunity to change things and make a difference.”
The FAC is a group of family members, hospital leadership and staff working to improve the care and experience of patients and families at MGHfC. To learn more information, visit the FAC website or email firstname.lastname@example.org.
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The Family Advisory Council at MassGeneral Hospital for Children is dedicated to developing a positive partnership between parents, children and hospital staff to promote family-centered care.