For anyone with a serious medical condition, frequent hospitalizations and clinic visits can have a profoundly disruptive impact. Yet adolescent and teenage patients have a uniquely challenging experience.
A boy who would otherwise be playing on a soccer team or performing in a play may be undergoing chemotherapy. A girl who had expected to be filling out college applications may be recovering from an auto accident. A teen who could have been experiencing a first kiss or practicing to get a driver's license could instead be in a hospital bed, suffering from a house fire.
Illness and injury can sideline teens from rites of passage. Yet they say they are also sometimes treated as bystanders in their own care, as one teenager vented in this YouTube video from her hospital room.
Wouldn't it be nice hear from more of these patients, in their own words, what they need most from us for their journeys through the health care system?
That’s what a team from the Johns Hopkins Children's Center set out to learn this spring. They were inspired by The Patient Wish List, a list of the top 10 requests compiled by our patient relations team from letters, surveys and other feedback.
The Children's Center team members wanted to create a similar top 10 list. But they also saw an opportunity to engage younger patients and draw them into conversations about what's most important to them. These teenage patients "have such a different lens," says Tricia Willis, patient- and family-centered care coordinator for the Children's Center.
They convened a special meeting of our Teen and Youth Advisory Council, which includes 13 current and past patients between the ages of 12 and 21, and asked them to reflect on their own experiences. They needed little prodding.
Their wishes, listed below, show that these patients place high value on the "touchy-feely" aspects of their experiences — engaging with child-life services, being called by a nickname if they have one, clinicians speaking directly to them rather than acting like they're not in the room. The list reinforces the message that every employee whose work touches the patient is important to that patient's experience, says Suzanne Mead, a parent advisor on staff in the Children's Center.
Later, four of the young patients read the list to the residents, nurses, social workers and others who had assembled for a staff conference on patient-centered care in pediatrics. The response was powerful. Busy employees who often use such meetings to check their email or pages were instead transfixed by the panelists.
The messages of these patients will reverberate for years to come. As part of a revamped employee orientation program, the original and teenage patient wish lists are shared with the newest members of the Johns Hopkins staff community.
The parents of young patients likewise have distinct experiences and wishes for their time in the hospital. They may be sitting at the bedside on tenterhooks, not knowing when the next update will be coming, their emotions wavering between optimism and dread.
So we carried out the same process with parent members of our Pediatric Family Advisory Council. The wishes — for clear communication, for sleep and to be involved in the care of their loved one — came through loud and clear. They want to know when they will have downtime so they can plan a meal, a shower, visits or other activities without fear of missing an important update.
Clinical staff members already know of these concerns, and they consistently strive to deliver care that is respectful of them. Yet there's something especially powerful about hearing directly from patients and their loved ones in such an authentic voice. You can almost imagine yourself in their place. You can feel their craving for engagement, inclusion, understanding and connection.
Aside from the output — these lists — the process of gathering patients' ideas is valuable in and of itself, says patient relations director Jane Hill. It helps patients and their loved ones to speak as true partners with health care professionals and removes the guesswork as to what's most important to them.
Hospitals are seeking ways to more meaningfully collaborate with patients and families to improve the health care experience, but exactly how to engage isn't always clear. Developing these lists is one powerful option that may lead to deeper conversations and understanding.
The Teenage Patient Wish List
Johns Hopkins Children’s Center
Teen and Youth Advisory Council
- Smile, introduce yourself and call me by the name I wish to be called. A smile goes a long way. It is much easier to talk to you when you smile at me. It helps put me at ease. I like to be called by my first name. Many teens may have nicknames that make them feel more comfortable. We want the hospital to have a more personal feel and not be so formal. Calling me by my last name makes me feel old. A simple ask goes a long way. It will start our relationship on the right foot.
- Be on time. Whether I’m inpatient or outpatient, waiting is hard. It is hard enough to come here, and to know that I may have to be here twice as long makes me dread it more. It also makes me not want to share things because it will make my stay longer.
- Communicate with me. Yes, me. I am here in the room too. I may not be an adult yet, but I want you to explain things to me in a way I understand as well. It is OK to talk to my parents; sometimes it is OK for you to even talk to them first. Just remember that I also want you to give me information in a way I can understand and encourage me to ask questions.
- Know my whole medical history if able. Just because I am here for one thing doesn’t mean there are no other things that you should know about me. It is important to me that you are thoughtful about all things about me. If you are treating my belly, it doesn’t mean my lung problems are not important. Just remember the “whole” me.
- Give me frequent updates. Waiting for answers is really hard. I may not tell you that I am worried, but I am. I even sometimes will make up my own answers. When giving the updates, it is helpful when they are detailed. I want as much information as you know. When you are vague, I tend to make up my own answers and think you are just trying not to tell me something. It is better to say you don’t know then to say nothing at all.
- Take a walk in my shoes. If even for just a brief moment, consider what it must be like for me sitting in your clinic or in my hospital bed. I would much rather be playing soccer, performing in my high school musical, attending my prom. I am missing “normal things in my teenage life.” I don’t expect you to fully understand or remember, but knowing for that brief moment you are going to consider it is helpful.
- Don’t rush. I know you are busy. I know you have many other important places to be and things to do, but when you take your time and hide how busy you are it makes me feel more comfortable. I also worry if you are rushing that you are going to forget something or miss something. Thank you for the time you are willing to give me.
- Distractions are helpful. All the things you offer, like Xbox, movies, games and Bingo, help me feel like I am not in the hospital. They make me feel more normal. I will probably turn you down sometimes, but please don’t stop offering. Knowing that you are trying also lets me know that you care.
- Keep my space clean. When things are clean and organized around me, it makes me feel better. I don’t want to worry about getting an infection. I always hear people say that hospitals have germs, so anything you do to show me you are trying to protect me makes me feel at ease — for example, cleaning my room every day and washing your hands.
- It helps when you comfort me and my whole family. We are not always going to be able to smile in return. Sometimes we are going to have a bad day. Sometimes we may even cry. It is OK to comfort us and acknowledge our feelings, even if it is uncomfortable. Sometimes we need our space, but also comfort us when it looks like we need it.
The Parent Wish List
Johns Hopkins Children’s Center
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 child’s care.
- 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 work.
- 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.
What Teenage Patients — and Their Parents — Want from Their Care Team,