Wednesday, May 12, 2010

How Family Centered Care Changed Our Lives.

Kathleen Sebelius, our Secretary of Health and Human Services, recently paid our children's hospital a visit. At the end of the day she made the observation that "family centered care" is something everyone talks about, but that our hospital was clearly *doing* it and becoming a leader in that arena. I'm talking about Cincinnati Children's in Cincinnati, Ohio.

She is absolutely right. We moved here 2 years ago specifically for this hospital, which is routinely rated in the top 5 in the country. Initially our decision was based on the simple fact that they had the best audiology team in our state, but as our son's list of issues expanded, so did our awareness of many other clinics and divisions in the hospital. I'm not saying that every single encounter we've had has been positive, but what I love about this place is the fact that they welcome feedback and take steps to correct problems. 

I've been volunteering on a family advisory council for a few months and at a recent meeting we were asked for input regarding a training program for the customer service representatives (CSR's). These are the people that greet parents at registration desks across the hospital. They're usually your first point of contact, so they need to give a positive impression. I shared a story about once having a tense interaction because my autistic son was jumping across the desk and throwing things while I was trying to register for an appointment. I suggested they get sensitivity training to be prepared for patients and families who require an "out of the box" approach to registration. Signing in and waiting for the appointment is usually tougher for us than the actual visit, so we really need understanding and support in the waiting area.

Within a week a committee was formed around my suggestion and I was asked to participate in crafting the training. We're now working with management, OT's, SLP's, Child Life Specialists, and parents to devise a workshop for the CSR's that will roll out in July. 

Talk about being responsive to family concerns! I'm just floored by this. 

Our hospital also has an Adaptive Care Team that works with families and children that have developmental disabilities. They provide extra support during a range of visits across the hospital. The Child Life Specialists initiated our plan of care which is basically a fact sheet on my son. It summarizes his sensory issues, what sets him off vs. what he finds calming, what toys and videos he likes to watch, etc. We were recently in the OR for an ear tube placement and when they took him to recovery, he was put into his own little room with his favorite video playing on a t.v. and 3 adults were there to help keep him calm until I arrived. Normally the kids are wheeled into a very busy and crowded PACU area where they are only separated by a curtain, there are no t.v.'s and you only get one nurse. When they saw his plan of care that the adaptive care team had written, they modified his recovery and as a result we experienced less trauma and got out of there twice as fast. 

This may not sound like a big deal to some people, but it completely changed our perception of hospital experiences. Since we're frequent flyers at our children's hospital, it has made a really positive impact on our lives. Most hospitals have family advocates who are there to assist us, so if you are a parent who struggles every time you take your child in for an appointment or procedure, ask these people to help. See if they can line up a child life specialist for your visit. Ask them what they can do to make your experience and that of your child more manageable. That's what they're there for. 


  1. How wonderful to hear! I have worked for many years, part time, with the National Initiative for Children's Healthcare Improvement, a non-profit organization that helps healthcare institutions do improvement work. What you've described is EXACTLY what we've been working toward, and it's so exciting to hear out in the field. I am going to forward your post to the execs there to let them know that the work is spreading!
    How wonderful, too, that your voice and experience are being used in such constructive ways!

  2. Wow Elizabeth! That's wonderful work and the impact it has on families is immeasurable. Thank you so much for your contribution!

  3. We were very fortunate to have a young woman work with our little guy as his aide in pre-k as well as a one-on-one para in our home, all while finishing her college education. My son has had many assistants, aides and therapists, all quite wonderful, but this one young woman was one of our favorites. We miss her very much since she left the city, but are glad to know she is an appreciated team member of the Child Life Specialist Dept. at Cincinnati Children's : ) .

  4. Oh, that's wonderful! I'll bet she loves her job. I've yet to meet anyone there who doesn't absolutely love being a part of that organization.

  5. Great post, Heather. As you know, we are recent transplants to Cincinnati too and we have been blown away by the Cincinnati Children's. The difference between the care it provides and what we experienced in South Carolina, where we moved from, is night and day. I kick myself that we settled for such mediocrity for the first five years of my daughter's life. Glad we finally found the courage to seek out the best. Thanks for your service on the council and for sharing your experience in this post.
    And, FYI, Heather's liitle guy is as cute in person as he appears on her blog!