Family Advisory Council Co-Chair Parent Coordinator: Joy Bennett
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Joy Bennett |
Joy Bennett's oldest daughter, Elli, was born with multiple serious heart defects. Doctors at Cincinnati Children's Hospital Medical Center (CCHMC) were not sure Elli would survive without a heart transplant, but after undergoing 4 cardiac surgeries between the age of 2 1/2 weeks and 3 1/2 years, Elli's heart is working well. However, within her first weeks of life, Elli's heart stopped for 30 minutes, which may be the cause of Elli's severe brain injury. Elli has severe Cerebral Palsy, is physically weak, and is unable to walk or speak. Elli participated in an early intervention program and an outpatient program at the Perlman Center run jointly by the hospital and United Cerebral Palsy (UCP) where she learned to communicate using a touch screen computer. This year, in kindergarten, Elli learned to read. Elli is very intelligent and has a great sense of humor.
At the suggestion of another child's mother at the Perlman Center, Joy served as a volunteer Family Advisor at Cincinnati's Children's Hospital Medical Center from 2004-2006. As a Family Advisor, Joy participated in a number of projects:
- Family-Friendly Billing. Joy was a member of the "Friendly Billing" Task Force. She worked with the Director of Patient Financial Services, Former Co-Chair Parent Coordinator, Amy Clawson, and others, to change the billing system to a more family-friendly one. Billing statements were redesigned to be easier to understand, and an on-line billing system was developed, tested, and implemented.
- Including Families in Rounds. Joy spearheaded a successful effort to include families in physician rounds within the Pediatric Intensive Care Unit (PICU). Joy's experience of being excluded from rounds when Elli was in the Unit prompted her to take action, including a letter-writing campaign to the CEO, the Director of the PICU, and the Director of Nursing, and bringing this issue to the attention of the co-chairs of the Family Advisory Council.
The hospital uses training videos, which include multiple vignettes, and other training techniques, to promote the practice of Family-Centered Rounds (FCR) on all clinical units in the hospital. Cincinnati Children's staff uses these videos as part of presentations in other hospitals around the country. - Family-Friendly Parking. As a member of the Parking Committee, Joy and others surveyed families to determine their needs and worked with the Security Department to figure out where and how to provide valet parking. The hospital is in the process of implementing a new plan.
In 2006, Joy became the Co-Chair Parent Coordinator for the Family Advisory Council. The Parent Coordinator position is a paid part-time position that she shares with another Parent Coordinator.
The Council is involved in a number of projects:
- Strategic Plan. The hospital's strategic plan includes, in Joy's words, "the goal to deliver the best patient and family experience." The Council wants to define what that means, in plain language, so that everyone can apply it to his or her own job in the hospital.
- Mapping Project. The Council and the Quality Improvement Department are in the planning stages of a mapping project to identify the elements of the hospital experience. Although "after the fact" surveys are often used, this project will attempt to collect data in "real time" as families experience a visit to the hospital either as an inpatient or an outpatient. The goal is to identify specific ways to improve the hospital experience and make it more patient- and family-centered.
- Hospitality Kits. Sometimes hospitalizations are unplanned. The Council supplies hospitality kits to families who have come to the hospital without the opportunity to go home before their child is admitted. The kits include basic amenities, such as a toothbrush, comb, deodorant, and shampoo.
- Survey for Cultural Experiences Project. Members of the Council volunteered to be surveyed for the Center for Health Policy and Clinical Effectiveness project. How cultural experiences effect treatment options were examined, by exploring if people like to be asked about their ethnic background, and if so by whom, how, and with what explanation?
- Family Faculty Project. Joy believes that including Family Advisors as Faculty to train residents makes families viable and equal members of the health care team. This process brings parents into the circle of caring for their children and teaches new doctors to see parents as experts about their children, creating an atmosphere of mutual respect between the medical staff and the parents. Joy recently invited the Council and key faculty members to critique a video that is intended to improve communication between families and physicians. In the post review discussion, everyone agreed that the format and contents of this two-year-old film needed to be updated. Faculty and staff who actively use this material said they would like the physician sections to be more tightly scripted and better ordered according to how they actually teach their students. As a result, the Council has launched a Family Faculty Task Force to create training curricula, teacher guides, and discussion questions targeting specific audiences, such as surgical residents, pediatric residents, fellows, faculty physician, and nurses.
- Tobacco-Free Family Education and Support. Joy is leading a sub-committee devoted to providing stress relief to families when the hospital goes tobacco-free in January 2007. Suggestions in the works include converting the current visitor's smoking shelter into an enclosed children's playground, developing a walking path, and renovating the Emergency Department waiting rooms to provide more activities and resources for families.
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Joy with daughter Elli and son Sam |
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Youngest daughter Anna hugging piano |
Joy's work has increased her confidence and honed her ability to articulate her thoughts. In her role as Advisor, and now as the Co-Chair, Joy feels empowered; she is more likely to speak up for what she believes in, and knows that what she has to say is important. In her experience, people really do appreciate hearing, in a constructive way, what will allow them do their job better.
Joy derives a great deal of satisfaction working to improve the delivery of care in a hospital setting. She hopes that her work results in a better hospital experience for families in the future.
Joy holds a BA in Professional Writing from Cedarville College in Ohio. Before having children, Joy worked as a technical writer and as a trainer. Since having children, Joy does freelance writing, web design, and has taught writing classes at Cedarville College. Joy enjoys gardening, knitting, and scrap booking. She also loves music and plays piano and keyboard for her church.
Learn more about CCHMC's Family Advisory Council