My name is Dr. Rozanne Hug Wille.  I am a Family Medicine Physician; and my son Hendrix was diagnosed with an aggressive form of Acute Myeloid Leukemia in March of 2012.  He was hospitalized for long periods of time for treatment and also received a bone marrow transplant.  Unfortunately, my son died in April of 2013 after a relapse of his leukemia.  I am currently trying to work with our local hospital to provide space for parents of children hospitalized for long periods of time.  They have agreed to give us a small space on the oncology unit.

My son was treated at two different facilities. We believe he had excellent health care at both facilities and we could not have asked for better, highly trained, and caring physicians and staff.  We are still friends with his doctors at both hospitals. One of the hospitals is in the process of redesign and I was told that they received parent and patient input. After viewing the drawings, I am pleased to say that they reflect dramatic improvements.  

I would like to let people know how important hospital design truly is in helping families that are there for long times.  It has such a huge impact and can help so much more than people realize. Here are some of my issues that I think could be greatly improved upon in hospital design.

1. Units that have children hospitalized for long periods of time should have single rooms that provide comfortable solid sleeping surfaces for two caregivers.  The pullout couch is not always comfortable.  At our local hospital, the surface does not go completely flat, creating a weird incline where people and their blankets were sliding down.  This creates many mornings with a stiff neck or shoulders.  A flat surface with a pillow would have been much nicer.
2. Some of the rooms only had a pullout chair that could sleep one adult.  When a child is hospitalized for long times, families with two parents or caregivers want some family nights together. I think this is actually vital to maintain the parental relationship during the child's treatment.  Children also need both their parents there sometimes.  It gives the child some sense of family, and allows the parents to share some of the overnight care burden.  The old hospital where my son received care was built a long time ago, and as expected, had very small rooms and a small single pullout sleeping chair.  These chairs did not even form a solid surface when pulled out.  They were more like a lounger with a foot stool.  It was impossible to sleep on these for more than one or two nights at a time. I ended up sleeping in the bed with him the entire time.  Thankfully, he was small enough to do that.  
3. Parents would greatly appreciate an alarm device for intravenous line (IV) pumps that go off OUTSIDE of the room.  We think if we can invent cell phones, internet alarms, on-line banking, etc., we should be able to create some alarm system that rings on the nurse's pager, phone, belt, or other device.  I would consider this the best invention of the century for overnight rest and sleep in the hospital.  The way it is now, the alarm rings at the patient bed side, won't stop until turned off, and if "silenced" only last a few minutes, just to wake you up again.  There is a 10 minute "almost done" alarm, then it gives a "completely done" alarm, then it also gives alarms for kinked line, air in the line, occlusion, solution too thick, and a ton of other things.  Also, the parents are instructed "please do not touch the IV machines;" however, we are actually experts at turning these things off by the end.  These alarms cause SEVERE sleep deprivation for the patient and caregiver hospitalized for long periods of time. I know patients and parents would be easier to deal with, more compliant, and likely get well faster, if they slept at night.  
4. If ALL overnight nurses had to use RED flashlights or green night vision goggles, now that would be amazing for parents and patients trying to sleep!  Some nurses and staff would come in, bang the doors, and turn on all the lights in the middle of the night, to see what they were doing, every 2-4 hours depending on the meds.  (We called the great night nurses "Night Ninja's".) 
5. Hospitals should not allow cleaning or support staff in patients' rooms at night.  We do not need the needle container changed in the middle of the night, we do not need our trash taken out, and we do not need our soap dispenser refilled.  All of these things can get by until morning.
6. There was no space to store and heat up food.  Only some rooms had small refrigerators, no freezers, and no microwaves anywhere.  We had to ask a nurse to heat up our food.  This was extremely annoying and gave parents NO CONTROL of when they could even eat by themselves.  This is what we are currently trying to get for our local hospital.  A small kitchen space designated for parents on the floor to store food, heat it up, and socialize. It is extremely expensive to purchase all of your meals out for long periods of time. Parents absolutely need a small kitchen with at least refrigerators and microwaves close to the patient rooms.  When children are small or very sick, a single caregiver cannot even make it to the cafeteria or the Ronald McDonald House.
7. When there is no communal space on the hospital floor, parents/caregivers are completely isolated.  Children are isolated when they are immuno-compromised, but when their counts start to come up, there is no space for them to play on the floor together and there is no space for parents to gather and support each other. Children play in the hallways or in their rooms.  That's it.  This is poor for child social development, and parents often become very lonely and depressed.  My three year old son was very active.  When families do not have a large support network, are from out of town, single parents, and have few visitors, they have an even more difficult time adjusting to 24 hours a day in a hospital for months at a time with their child. Families would greatly appreciate a family area where children could play and adults could interact, even a small space.
8. Early morning change of nursing shift can be extremely loud, and none of the parents like to be near the nursing stations during this time.  It can wake patients and their parents every single morning, usually after a long difficult night. A room that is closed off from the patient area, specifically for this event would be great.
9. Children that were older had no privacy from their parents.  Teenagers would complain they had no private space in the room to change their clothes, talk to their friends, get on their computers and iPads, etc. Sometimes I would see parents standing outside the rooms to give their child some privacy.  If something for visual privacy could be placed between the parent/child areas in the room, this might help the older children, but also accommodate younger children.
10. Parents that care for sick children for long periods of time need support in the hospital.  I think single parents with small children need even more help, as the young child needs and wants constant supervision.  I think design should include comfortable areas for eating, washing clothes, showering, sleeping, and relaxing or interacting with others on the same floor where the child is hospitalized.  Leaving the hospital floor to go home, or to a Ronald McDonald House, the cafeteria, etc., was just too far for single parents with small children, so they just didn't go.  It was too big of a hassle to try and find someone to watch their small child for two to three hours while they went and did laundry and cooked a meal.  Also, when children are sick, they become more attached to their caregivers.  Children become more upset when their parents leave, and parents can't handle seeing their children in more distress and pain then they are already in with their illness.  Parents feel even more guilt and loss of control, and end up not wanting to leave.  

After our experience, I know there is room for a lot of improvement to make pediatric hospitals friendlier for families and caregivers.  We hope our experience can help others that have to undergo a similar situation.