Pediatric Family Advisory Council
- 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?
- 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.
- 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.
- 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.
- 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
- 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.
- 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
- 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.
- 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.
- 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.