Wow… I apologize in advance as this post may be long!! As I have mentioned in previous posts Troy and I have been invited to serve on the Cincinnati Children’s Heart Center Family Centered Care Committee. We had our first meeting last night and it was an amazing meeting of minds. I think we were by far the youngest people in the room and certainly had the youngest child but we were able to bring fresh and recent experiences to the table seeing as how we just had surgery and spent the month of March living at CCHMC.

We never could quite put our finger on what it was that made Cincinnati different than other places we had been. We just knew that we felt more comfortable there. We soon realized that it was the practices of Family Centered Care that really were able to engage us and make us feel comfortable during a very tumultuous time in Kyleigh’s life. I am so incredibly excited to be a part of what is happening at the Heart Center and to hopefully be able to glean many things from them and bring them home to Kentucky. That is my ultimate goal. Help CCHMC in turn learning ways that I can come home and help UK!!!!

So what is Family Centered Care? Lots of people think that its being “cordial” to the families. WRONG. Family Centered Care is a DEEP subject and to be able to truly implement it a facility one must be able to address care on many different levels. Family Centered Care as defined by the Institute for Family Centered Care :

The core concepts are:

• Dignity and Respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.
• Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete, and accurate information in order to effectively participate in care and decision-making.
• Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
• Collaboration. Patients and families are also included on an institution-wide basis. Health care leaders collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.

Now that we KNOW what it is… how does one take that and make it work? I haven’t quite figured that one out yet! But I will! I am on a mission!

As a parent I have to tell you what FCC means to us. It means the world to us. To know that we are a WELCOMED participant in our child’s care is huge. Not one time have we ever been “talked down to” at CCHMC. We were invited to attend rounds each morning and stand side by side with the surgeons, doctors, fellows and nurses who were caring for our child. Each time at the end of listening to the doctors thoughts they ASKED us what our assessment of our child was and if we had questions or suggestions. They actually LISTENED. Its one thing to ask and then shoot down everything that is being said. The really took into consideration what we were saying. That kind of inclusion in our child’s care has educated and empowered us to become an advocate for our child. We no longer FEAR the medical professionals that we work with. We understand that while we may not be able to give generalizations on care we certainly are able to have a poignant conversation about our child specifically and produce positive results!!! Furthermore the efforts that are being made to communicate with families is to be commended. Not only is CCHMC trying to communicate they are going one step further… to understanding. That is huge. Being able to talk AT someone and talk WITH someone are two very different things.

It was very refreshing to be involved with the Committee last night and we look forward to many more productive nights!!! It is my hope that one day UK will be able to embrace and practice this kind of care on a widespread basis. Right now there are handfuls of really amazing medical professionals at UK who have whole heartedly embraced this philosophy and may not even know it. It something that comes naturally to them. Others… not so much. I know that UK is making strides to become “A Top 20 ” Hospital and I know that “care” reaches further than the boundaries of medicine. I hope that UK can find Family Centered Care and latch onto it quickly!

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