Parent Guidelines on How to Treat Young Patients

This is something you don't often see in print. I will give the Armstrong Institute of Johns Hopkins Medicine credit for being this bold, but I have reservations that a lot of this is still not happening. This is quoted from their newsletter. I will have my comments in the last of three blogs.

The Parent Wish ListJohns Hopkins Children’s Center
Pediatric Family Advisory Council

1. Meet my basic needs. Once I have adjusted to the shock of my child being admitted to the hospital, orient me. These are the things I need to know: Where can I get food? How can I make parking more affordable? When can people visit? Where do I sleep? Where do I shower? What other resources do you provide? Is there anyone else that can support me through this stressful time?
   

2. Let me see you wash your hands. I worry about germs. I know how many germs are in the hospital. Watching you wash your hands is the first step that lets me know you are going to keep my child safe.
   

3. Before you start speaking, introduce yourself. I want to know who you are. I want you to know who I am. I expect this from anyone who enters my child’s room. I want to know how you are going to be involved in my child’s care. It also really helps when you are friendly. This is stressful, and kindness goes a long way.
   

4. Communicate, communicate, communicate. I am waiting for updates, any updates. Sometimes I wait hours just to hear what you have to say. So when you do come, give me as much information as you know. If you get delayed, let me know. I plan the day around the times I get to communicate with the care providers. It’s also OK to say you don’t have the answer but that you are going to find out and get back to me. Communicate.
   

5. Know my child’s whole history. Read about my child. Read the notes from other people who know my child. If you don’t have access to my child’s history, ask me. I am my child’s best historian. Be sensitive to my child’s complexities. I appreciate when you are willing to talk to others involved in my child’s care.
   

6. When you are with me, be present. I know you are busy and time is precious, but please take time when you can to answer my questions and outline the plan for the day. I want to be included in formulating that plan, discussing goals big and small. Let me know what I can do to help move things forward. Sharing the next steps with me is helpful. The unknown is scary, so the more information I have, the better.
   

7. Tell me when there is downtime. I don’t want to leave and miss something important. I appreciate when you tell me this is a good time to take a nap, grab something to eat, take a shower, have visitors or maybe even get in a few hours of work.
   

8. Answer the call bell. Please answer when I call. And once you answer, please come to my room as soon as you can. Minutes can seem like hours when my child is in pain or I am stressed and worried about something. Let me know you will do your best to be there. If I am unable to be there when my child calls, it makes me feel better to know someone is going to check on my child quickly. It’s hard to leave, but sometimes I have to.
   

9. Clean my child’s room. Keeping my space clean is important to me. This becomes my home, especially when we have extended stays. It is helpful to have the trash emptied, the food trays removed and a clean bathroom. It is also helpful when common areas are clean.
   

10. Sleep is precious. I know I am not going to get the same amount of sleep that I am going to get at home, but whenever possible, please let me sleep. Group tasks together, if medically possible, especially overnight. The little things you do to meet my basic needs go a long way in showing you care.