JKF Journal

Tuesday, May 29, 2007

Introducing the Care Journal

Have you ever been a patient or had a loved one who was a patient in a hospital? Did you feel overwhelmed and scared? Was a lot of information thrown at you? I am guessing that your answers to the above might be yes. I know that I felt that way when Josie was in the hospital. I was in a new environment and I was scared out of my mind.

One thing I did that really helped was to write. I kept a journal. I kept track of everything from my parking space number to the names of the nurses on duty. I documented the medications she received and I wrote down questions and concerns I had for the doctor. Writing gave me a sense of control in a situation in which I had none. It helped me stay organized and on top of what was going on each day.

In my conversations with other patients and families over the years I have learned that they too often found comfort in writing. I decided that the Josie King Foundation needed to offer a journal that would help patients and their families manage their hospital stays. Each page would represent a day of health care, whether the patient is in the hospital or after they have been discharged. We call it the Care Journal.

It was time to take the Care Journal out for a spin in the healthcare industry. What I learned shocked me. I was having dinner with a wonderful group of nurses. I excitedly unveiled the Care Journal campaign and as I waited for them to tell me how great of an idea it was. All I saw were blank faces.

They told me what it felt like to them and their colleagues when they see a patient or family member writing. It makes them feel threatened. Healthcare providers think that patients are creating documentation so that they can later sue. However, they all agreed that when they or their loved one was in the hospital that, absolutely, the one thing they did was to write. I asked other healthcare providers if they felt threatened in the same way, and the majority of them did.

I had no idea that nurses and doctors felt this way. The last thing I wanted to do was to further alienate the nurses from the patients, but I felt so strongly that patients should have this tool. My nurse friends and I came up with the perfect solution. The Care Journal needed to come from the hospital. It needed to be a gift from the nurse to the patient or family member.

This made great sense. We could offer a handy tool AND we could help bridge the gap of mistrust between the healthcare provider and the patient. Now, instead of a nurse looking at a patient and feeling threatened that nurse can say, "Oh, I see you are writing in your Care Journal. That is great and don't forget to write down your questions for the doctor when he makes his rounds."

Right now, we're working on the final touches of the Care Journal. We expect to have them in one month. If you work at a hospital interested in partnering with the Josie King Foundation to distribute Care Journals to your patients, I will send your hospital however many you would like. You can write up a personal note to your patients telling them that you encourage them to partner with you in their care and attach it to the inside of the Journal. All I ask is that your organization make a donation to JKF. Just contact me and we'll get you started.

If you are a patient, the Journals will be available from our website in a few weeks. All the money from the Care Journal project will go back into this patient safety movement, funding great new ideas to improve the culture of healthcare.

I hope you like this project. Please email me at sking@josieking.org to learn how to partner with us, learn more about the Care Journal, or- very importantly- let me know your thoughts on the project.

Labels: ,

2 Comments:

  • At May 30, 2007 at 10:00 PM , Blogger Miles202 said...

    We ran into this as well. We regularly asked to review our daughter's chart and were met with resistance. It wasn't until we discussed it with the senior doctors that we understood some of their concerns and arranged to review the chart regularly in a format where everyone was comfortable.

    One of the concerns they raised about just having us review the chart on our own were 1. much of the information is cryptic or confusing to a lay person (once we reviewed it we would not have agreed more) and 2. they had had some instances of parents who have altered a patients chart (who know? I still can't imagine someone doing this).

    To your point, there was a underlying aprehension on both parts about the motivation (for us wanting the chart and for them resisting sharing the chart). But it was based largely on mis-perceptions. Once we all took the time to understand each other we got passed it.

    Miles

     
  • At October 11, 2007 at 4:37 PM , Blogger Lisa Lindell said...

    Hi Sorrel--
    I jotted down notes to myself on a huge calendar hung on the wall of my husband's hospital room. The only reason I wrote little things down was so that he could recapture this chunk of his life he was missing, little triggers about each day so I could tell him what he missed (he was in a coma for months).
    That calendar became the foundation and basis for the book I eventually wrote abou the experience. "108 Days."
    In our third month in the hospital is was torn down from the wall and discarded. I had to wade through biohazard bags to retrieve it.
    I was struck by your comment that nurses feel threatened by a lawsuit when family members write. That's absurd, this hostility between pt/family and medical care givers comes directly from the health care profession. At least it did in our case...initially I trusted them blindly and thought they were there to help. I learned, the hard way, that was not the case. This terror they have regarding lawsuits must be coming from their administration. Maybe that's an area to focus on.
    Your new website looks great!
    Lisa Lindell
    www.108DAYS.com/home

     

Post a Comment

Subscribe to Post Comments [Atom]

<< Home