Patient & Family Experience
Jennifer Johnson, Director Family & Community Outreach, Golisano Children's Hospital
Families are the center of a child’s world so it makes sense that families have a role and are recognized as part of the decision-making process at Golisano Children’s Hospital. It fits the mission of continually improving the overall experience for all of our patients and their families. Jennifer Johnson, the Director of Family and Community Outreach at Golisano Children's Hospital has experience as the mom of a patient (2012 Miracle Kid Grace Esposito) and is working to ensure the voice of parents and families go far beyond her own to include different diagnosis, different outcomes, social and ethnic backgrounds, genders, sexual orientations, geographic regions and physical abilities.
Family Connection Program
The Family Connection Program is one way voices of families are heard. The FCP is made of families who have all had either an extended stay or multiple stays at Golisano Children’s Hospital or, in at least one case, may live in the Rochester, NY area but may have to travel outside the state to receive the necessary care. The ideas, insight and feedback from these families is invaluable. The FCP started in 2020 with four focuses:
- Quality Improvement
Our health care teams are constantly evaluating the way things are done to ensure the best outcomes and care. Adding a parent or parents to these teams ensures the patient and family perspective is included in this work. Parents who join a QI team must sign a Privacy and Confidentiality form as well as commit to participating on that team for a certain length of time.
- Family Buddy Program
Families who have been through a health challenge with their child and are a few years out from the start of that challenge are matched up with a family who is just beginning the journey. Parents who serve as buddies must sign a Privacy and Confidentiality form as well as commit to participating in the Buddy Program for a certain length of time. Further there is training for sharing your experience and ways to handle input you get from parents. For NICU parents you must be 2 years out of the NICU to participate.
- Sharing Hospital Experiences with the Public
Since families are at the heart of what we do, our Advancement team and Public Relations team like to feature our patients in TV and radio interviews. The Care for Kids Radiothon right around Valentine’s Day is the time for our biggest need for families to be interviewed by the media. We also like to have families speak at fundraisers all year like our October Gala, various fundraising golf tournaments and Kiwanis club dinners. Many local businesses are tied into the Children’s Miracle Network which raises money for us. We like to get families out to these businesses to say thank you. Same goes for school fundraisers and community fundraisers.
- Growing Our Bereavement Advisory Board
Under the direction of Liz Conrow, Pediatric Bereavement Coordinator, this group updated the Bereavement Support website, and is looking into a Bereaved Parent Mentoring Program. They also participate in the Bereaved Parent Educator Program in which bereaved parents train Fellows how to share difficult news with families.
The Family Connection Program has been consulted on other projects like, redesigned safety measures put in place when COVID-19 hit, and thoughts on the creation of a “Sandy Trail” for families to follow to get to the right area of the hospital.
If you would like more information about the Family Connection Program, our patient and family experience initiatives or if you would like her to speak at a community or school event, please email Jennifer Johnson at Jennifer_Johnson@URMC.Rochester.edu
Carla LeVant, L.M.S.W., Senior Social Worker
Parent Advisory Council
Parents also serve on the Parent Advisory Council. Read more about the Parent Advisory Council.
If you would like more information about the Parent Advisory Council, email Carla LeVant at Carla_LeVant@URMC.Rochester.edu
Resources for Patients and Families
For more information for patients and families about what to expect during a hospital stay or medical procedure, visit these pages on the Golisano Children's Hospital website.