One Mother's Experience With Family-Centered Care
From October 2001 through April 2006, Amy Clawson was co-chair of the Family Advisory Council and was a parent coordinator at Cincinnati Children's Hospital Medical Center. She wrote about her experience with her son after starting her work with family-centered care.
Reaping the Benefits of Family-Centered Care
I knew one day I would reap the benefits of the family-centered care work I was doing at Cincinnati Children's, but I wasn't expecting it to happen this quickly. This recent, pleasantly surprising experience has strengthened my determination to enforce family-centered care at Cincinnati Children's.
On Sept. 10, my son Timothy was scheduled for surgery to re-insert the Baclofen Pump catheter line into his spinal cord. The struggles that led to this day were more challenging than my family was prepared for: a summer with little sleep, constant worry, weekly trips to the clinic, numerous daily phone calls and just simply trying to be a normal family with a special needs child took a toll on us in many ways. We were drained.
Going into surgery that day, I was extremely anxious -- not just about the surgery itself, but also the post-surgery and recovery on the same unit as last year's pump insertion. That first experience was not a good one.
I was very excited to see changes the unit had made since the previous year. The changes I saw went well beyond physical appearance.
When we arrived at our unit, Timothy was very comfortable and had no breathing issues or pain. Our unit admitting nurse was pleasant and asked for input about Timothy while assessing his condition. She then continued to seek more information on a detailed document and concluded with, "Is there anything I can do for you?" I just wanted to hug her!
When each subsequent nurse asked some questions about Timothy, we felt open to discuss pain management and collaborate with them on a plan.
The unit doctor and medical student were calm, pleasant and genuine. Our student's words truly touched us.
"Do you mind if I ask you about Timothy so that I can learn more?"
My husband Paul and I were overwhelmed by the compassion and support both doctors demonstrated. We immediately embraced their questions and had wonderful, open conversations about Timothy and family-centered care. Their eye contact, body language and calm tone of voice made all the difference in the world.
Paul and I were very impressed with the pain charts, called the "Oucher Scale," that were available for nonverbal children like my son. We did not use them, however, because Timothy used his DynaVox communication device. It was helpful to have had a choice about how he could convey his discomfort to any health-care professional entering his room.
Another choice that was much appreciated was Timothy's menu selection. The new food service program was fantastic! We took full advantage of ordering Timothy all of his comfort foods. The food service assistants were very cordial both on the phone and upon delivery. It was comforting for him to be able to choose his own meals.
Every health-care professional involved with Timothy's care treated him with the utmost respect and compassion he deserves. Because our nurse released us with his medication schedule and because the entire unit staff was so supportive, Paul and I felt empowered to care for him at home appropriately. We had a great team on our unit!
It is important to know that I felt compelled to tell each and every health-care professional how wonderful they were. I spoke to some of them in depth about family-centered care. They conveyed genuine interest in the concepts.
This positive experience wasn't without exception. There is still much room to grow in family-centered care at Cincinnati Children's.
Amy Clawson, amy.clawson@cchmc.org
