Institute for Patient-Centered Design

Patient-Centered Design Online

Publication of Institute for Patient-Centered Design, Inc.

March/April 2014, Issue 28

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In This Issue
Letter from a Parent
NICU Simulation Lab



This issue of Patient-Centered Design Online™ was developed in memory of Hendrix, a very special boy who died a year ago of cancer. We have included a letter from his mother Roze that we received last year after her family's ordeal in the hospital. We at the Institute are honored and grateful that Hendrix's mom was willing to share her family's story with us in hopes of improving accommodations for other families. Roze's letter has inspired this year's design competition, "The Family Centered Cancer Care Environment," which starts today.


The format of the Family Centered Cancer Care Environment Design Competition will be different from previous years. In our two previous competitions, our final model displayed at the annual Healthcare Design Conference was inspired by the top three design solutions received. While the Institute and its partners used an evidence-based design approach in the development of the model, this process was not widely shared with our audience.  For this project, we have decided to extend the design phase of the project through the end of the year. Starting today, design competition participants are challenged to submit their projects (built or conceptual) by the end of July. Our jury of experts will review the submissions and shortlist the top three. Instead of unveiling a hybrid model of the top three projects, we will invite the top three design teams to present a virtual reality walk-through of their projects as esteemed speakers in a formal session at the Healthcare Design Conference in San Diego.  All conference attendees will have the opportunity to vote on the winning project. The final model will be developed working directly with the winning team, built and presented as the Patient Experience Simulation Lab for the 2015 Healthcare Design Conference. We believe this will be an exciting process for everyone involved, allowing us to not only engage the global healthcare design community in the process of exploring design solutions, but also to invite the 4000 expected conference participants to ultimately decide the winning project. Please look for more information from our team as the project progresses. In the meantime, please share your comments through our Patient-Centered Design Alliance; and you may download the call for submissions at



 Tammy Thompson
President, Institute for Patient-Centered Design, Inc.
Letter from a Parent: Suggestions for Making Pediatric Hospitals More Friendly for Families


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. 


Dr. Rozanne Hug Wille has agreed to serve on the jury for the Family-Centered Cancer Care Environment.  Read more about her journey at


The NICU Simulation Lab Continues!


The Patient & Family Centered NICU Simulation Lab, built for the 2013 Healthcare Design Conference, was recently reassembled in the metro Atlanta area. In partnership with Nexxspan Healthcare, LLC, Institute for Patient-Centered Design is in the process of making improvements to the model in preparation for the 2014 Healthcare Design Conference, in San Diego.


The project team is hosting tours of the model through September in order to brainstorm for improvements with the local healthcare design community and to provide new ideas for hospitals embarking upon new NICU projects. For more information, please visit


Calendar of Events 
May 3-6, 2014
Environment for Aging Conference
Anaheim, CA
May 20, 2014
NICU Lighting Webinar
May 29, 2014; June 26, 2014; July 24, 2014; August 21, 2014; September 18, 2014
Patient & Family-Centered NICU Tours
Norcross, GA

July 10-11, 2014

2014 ROSE Breastfeeding Summit

Atlanta, GA


August 2-4, 2014

Transforming Barriers into Bridges, 5th National Breastfeeding Coalitions Conference

Arlington, VA


August 6-8, 2014

The 6th International Conference on Patient- and Family-Centered Care: Partnerships for Quality & Safety
Vancouver, British Columbia, Canada


November 15-18, 2014 | San Diego, CA

2014 Healthcare Design Conference

San Diego Convention Center


We are proud to continue our association with the Healthcare Design Conference! This annual event engages the leaders in healthcare facility design on the most current, innovative, and evidence-based advances in the field.


As a courtesy to our readers, we have listed information about upcoming events and links to related websites for more details. This does not necessarily constitute a relationship between Institute for Patient-Centered Design and any of the websites, events or organizations listed. Nor does this represent an endorsement or guarantee of any kind. While we strive to keep such information updated, we make no legal or otherwise binding commitment to do so. We do not guarantee any of the information on the websites listed. Nor do we guarantee the events themselves. 


The 2014 Family-Centered Cancer Care Environment


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The views and opinions expressed in this newsletter do not necessarily reflect the views of the Institute for Patient-Centered Design, Inc. We respect the rights of patients, family members and professionals to express their opinions and welcome comments on the topics published in this newsletter. We reserve the right to edit and publish comments and letters at our discretion.


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