Profiles of Patient and Family Advisors and Leaders
Family Advisory Council Co-Chair Parent Coordinator (former): Amy Clawson
Amy Clawson has two sons. Her oldest son, Ben, was born with a cleft lip and palate, requiring a number of surgeries as a young child. Amy's younger son, Timmy, was born prematurely at 31 weeks, and spent two months in the Neonatal Intensive Care Unit (NICU) at Cincinnati Children's Hospital Medical Center (CCHMC).
Timmy's time in the Neonatal Intensive Care Unit, and his early years, were very difficult for the Clawson family. When Amy was at Timmy's side in the hospital, a babysitter stayed with Ben, while Amy's husband, Paul, tried to earn a living. It was touch and go, hour by hour, whether Timmy would live. He was repeatedly resuscitated. When he finally came home on an apnea monitor, he cried constantly. The family had to hire help just so Amy and Paul could get some sleep. Amy felt powerless and extremely isolated; she didn't know any other parents in a similar situation.
Amy didn't fully understand Timmy's condition — no one had given her a diagnosis for nine months. Amy, wracked with guilt and suffering from depression, made an appointment to take Timmy to Dr. David Franz, a neurologist. She said, "I don't know what to do with my child." Dr. Franz picked Timmy up, held him, played with him, and told Amy "Timmy's going to be a special boy". With the most compassion, Dr. Franz explained that Timmy had periventricular leukomalacia (PVL), which caused cerebral palsy (CP). He said, "It may be difficult now but Timmy will teach you more than you can imagine."
Amy's experience with Dr. Franz changed her life. He shared the vital information about PVL and CP and showed her how to play with her son! Dr. Franz told her to seek out the special hospital sponsored preschool program with integrated therapy; gave her information about the school district; and directed her to a support group. She found resources and could see a light at the end of the tunnel! She found her voice, started asking questions and getting the necessary support from specialists and others within the community and the hospital.
The Clawson Family
Amy attended a support group sponsored by CCHMC, for mothers whose children had been in the NICU, and felt an instant connection. At her first meeting in 2000, two Neonatal Intensive Care Unit staff members -- a nurse who had taken care of Timmy, and the business director of the Unit -- asked Amy to work with them on a committee as a volunteer. They needed someone who could share feelings and experiences as a parent of medically challenged children to champion the new family-centered care initiative. Amy agreed, not really knowing what would evolve, but she knew it would be a positive experience.
The very next month, Amy and others from the hospital attended the Institute for Patient- and Family-Centered Care's intensive training seminar in Hershey, PA. Amy returned "with an exciting vision of forming a Family Advisory Council." An entirely new arena opened in Amy's life, as she and others in the Neonatal Intensive Care Unit piloted the new philosophy of family-centered care.
While the NICU was the first department at CCHMC to integrate family-centered care, this approach has since expanded throughout the hospital. Amy's work with the Family Advisory Council has touched many areas of the hospital, including:
- Family-Friendly Billing. The Family Advisory Council's initiative to redesign the billing process to make it more family-friendly heightened the awareness in the billing department of a "we/them" perception. As a result, the department learned to be more supportive of families. Changes include:
- Redesign of hard copy billing statements;
- Design and implementation of on-line billing;
- Pursuit of translating statements and billing information to Spanish;
- Assignment of a "Family Billing Specialist" to families with a child with chronic long-term medical needs; and
- Family Financial Advocates proactively meet with families to assist with insurance and other resource questions.
- Family Faculty Program. This program provides a "structured opportunity for parents to participate in the training of health professionals." One of the goals is to "foster communication, mutual respect and collaboration between parents and health care providers." Residents and a facilitator meet once a month with one of the members of the Family Faculty. The family shares pictures and stories of living with a child with one or more chronic conditions. Residents ask questions and learn first hand the types of physician behaviors that families find most beneficial. The program provides invaluable lessons to residents-in-training on the importance of good communication with families.
- Surgical waiting room re-design. Amy co-chaired the renovation task force to design a space to meet the "emotional and physical needs of the children and families during their surgical experience."
Amy continued as a volunteer Family Advisor for almost two years until she accepted the position of Parent Coordinator. This is a paid position shared with another parent with whom Amy co-chaired the Family Advisory Council.
Ben and Timmy Clawson
Amy notes how, in sharp contrast to her experience with Ben [and Timmy] many years ago, family involvement is now deeply ingrained at the hospital. Whenever the hospital plans a change, the first consideration is how to get parent involvement. Examples include inviting input from parents to improve discharge procedures and including parents on the redesign committee when the cardiology department decided to revamp its clinic. Amy's perception is that families collaborate with health care providers and have better, friendlier, and more respectful communication (even when there is disagreement) than ever before. Now when families leave the hospital, they have detailed discharge instructions, understand what needs to be done, how to get quick responses to unanticipated events, and are supported in the care of their child.
Amy recently passed the torch to other parents and advisors to take patient- and family-centered care to the next level, as she takes on a new challenge in the hospital. Amy recently accepted a part-time position in the Division of Developmental and Behavioral Pediatrics - Department of Outreach, where she hopes to be a resource for families whose children have developmental disabilities. Amy will help families develop a link to the community to stay connected with each other and the available health care and educational providers.
Amy describes her work as a Family Advisor and as the Parent Coordinator for the Family Advisory Council as a blessing.
Amy is a graduate of the University of Pittsburgh at Johnstown. She worked as an accountant in Cincinnati for 8 years, until her pregnancy with Timmy. In Amy's spare time, she enjoys walking, playing with her dogs, and scrapbooking. In the last two years, she's developed a passion for baseball and football, attending her son's sporting events and watching the Cincinnati Reds and Bengals. In 2005, Amy received the Family Advisory Council Award of Excellence in Family-Centered Care from the Cincinnati Children's Hospital Medical Center.
Learn more about CCHMC's Family Advisory Council