The voices of patients and families are an essential, guiding force in MassGeneral Hospital for Children (MGHfC) operations, extending from the hospital’s Family Advisory Council to specialty areas of care.
The Center for Pediatric Hematology-Oncology at MGHfC relies upon feedback from its own group of family advisors, which meets quarterly to guide operations and program planning in the MGHfC center.
“They present the parents’ voice to our practice, which is incredibly important,” says Elyse Levin-Russman, LICSW, clinical social worker in the Center for Pediatric Hematology-Oncology, and the group’s organizer.
The group’s recent efforts include oversight of successful family events such as Dad’s Night Out, a gathering for dads in box seats at a Boston Bruins game, and Celebrating Amazing Moms, a brunch for moms at the Liberty Hotel, featuring presentations from childhood cancer survivors. These programs aimed to bring families together for support, while providing a diversion from the challenges of cancer treatment.
Members of the Pediatric Oncology Advisory Committee especially appreciate these experiences, as parents who are going through or have gone through the process with their own children.
“I’ve met a lot of these parents and we’ve really formed a bond,” says Joe Barnes, who with his wife, Nancy, has been a member of the advisory council for three years. The Barneses joined shortly after their daughter finished cancer treatment at MGHfC. “When we get there it’s a welcome opportunity to see folks who have been through the process,” Mr. Barnes adds of the council meetings.
The group currently has nine members, but recruitment is ongoing, and new members are always welcome. The Clinical Social Worker Elyse Levin-Russman, Physician Mary Huang, MD, and Nurse Heidi Jupp, RN, from the practice are also participants in the committee. The committee is a collaborative enterprise involving parents and caregivers. Such is also the case for MGHfC’s Family Advisory Council.
“The reality is these are all parents who have walked a similar path,” Levin-Russman says.
The Barnes family worked with Levin-Russman while their daughter received treatment, and Joe Barnes says getting involved with the council was “the least we could do,” to give back. The Barnes’ daughter is healthy and is in her senior year of high school this year.
The advisory committee has contributed to the experiences for families connected with the MGHfC center in a number of ways. Members created a welcome letter for families that was part of a packet introducing families to the pediatric oncology unit and preparing them for the journey ahead.
The advisory committee also discusses suggestions presented by parents and children.
“We’re trying to look at the delivery of the service and how we can make it better,” Mr. Barnes adds.
Mr. Barnes describes the group meetings as brainstorming sessions in which members discuss what they can do for parents and how to improve communication between families and caregivers. In the process, they often draw upon their own experiences.
“It’s a wonderful opportunity to give back and Elyse does a great job bringing a lot of ideas—it’s a free-flowing group that does what it can to improve what is a tough situation,” Joe Barnes adds.