ParentWISE–Parent Wisdom In Shared Experience–a program created by parents to support other parents during their child’s diagnosis and treatment is celebrating its 30th anniversary this year.
It began as a volunteer family-to-family initiative in Hematology/Oncology, and has grown to encompass other areas of the hospital, such as the Siragusa Transplantation Center for families of children with solid organ transplants, the Neonatal Intensive Care Unit (NICU) and several other specialty areas of the hospital and clinics. The most recent area to add ParentWISE services is the Gender & Sex Development Program. “ParentWISE serves our patient families in a way that hospital staff often can’t – on a non-clinical, personal level. Parents can speak frankly with each other about their experiences. Newly diagnosed families often ask, ‘Is there someone I can talk to who’s been through this?’ and just knowing a program like ParentWISE exists is a great relief,” says Teri Foster, Director, Volunteer Resources.
The program helps to connect, empower, and support parents. ParentWISE defines a parent as anyone who legally makes the day-to-day medical decisions about a child’s treatment, which means it could be a grandparent, aunt, uncle, an older sibling or a legal guardian. There are currently over 200 ParentWISE volunteers. Many of these volunteers are considered “virtual,” providing support by phone. Those who visit the hospital can be identified by their distinctive purple uniform vests (also worn by PeerWISE volunteers).
ParentWISE volunteers provide families with a supportive outlet whether by phone or general “how are you” visits during admission, before a procedure or through outpatient treatment. The program aims to help normalize the treatment experience. “Sometimes, the conversation will be about a distraction like the weather or sports. At other times, it could be life changing. Fundamentally, our volunteers offer listening and hope to families during difficult times,” says Gale Morgan-Williams, ParentWISE Coordinator, Family Services.
For Sue Henderson, a ParentWISE volunteer for the past 24 years, the program has provided her with comfort, hope and strength. “My son, Jimmy, was a patient in the fall of 1988. The ParentWISE Program (then called Parent-to-Parent) had just started up the year before. I remember that every day someone would come by to visit with me and talk,” says Sue. “Although my son didn’t survive, I feel like every Thursday his legacy lives on through my work as a ParentWISE volunteer. You meet wonderful families that are going through awful times in their life but I can share that I’ve walked in their shoes and that no matter what happens you can carry on. It is a very rewarding experience.”
ParentWISE coordinators connect parents with volunteers based on a number of factors which may include a similar diagnosis or treatment, or even factors such as language. The ParentWISE program has several active volunteers who are bilingual in Spanish/English. All volunteers attend a mandatory six-hour training.
The comfort, hope, shared experience and dedication of this parent-to-parent volunteer initiative has created countless supportive bonds between patient-families. “ParentWISE knows the struggle is real. The volunteers are so supportive. Talking to Sue has been such a comfort-having someone that knows what it is like and to be able to open up to them about what we are going through is so helpful,” says Lourdes Villanova, a mom whose son is undergoing treatment.
ParentWISE operates with the support of philanthropic funding. To learn more about how you can support this program, please call Lurie Children’s Foundation at 312.227.7500 or e-mail firstname.lastname@example.org.
Contact email@example.com or 312.227.3280 if you would like to have a coordinator contact you about participating in the program.
ParentWISE has inspired a similar program, PeerWISE. It began in 2006. The PeerWISE volunteers, who undergo the same training as ParentWISE volunteers, are former patients helping current patients understand and cope with their care needs.