I am Emily Sullivan, Director of Streetlight, a peer support program for teenagers with chronic and terminal illnesses. AMA!
I direct an adolescent peer support program called Streetlight at UF Health Shands Children’s Hospital. Streetlight is based in Gainesville, Florida, and it is the only program of its kind.
Recently in pop culture, we’ve seen media like The Fault in our Stars and The Red Band Society highlight the importance of peer support for teens and young adults living with chronic illnesses. However, as many young people will tell you, traditional support groups are not always the answer, and movies and TV are often very far from reality. Streetlight is a unique, non-medical model of palliative support for chronically ill patients between the ages of 13-25.
We use peer relationships between specially trained University of Florida student volunteers and teen/young adult patients as the foundation for support. Medicine can do a lot, yet medicine cannot throw a prom, wage a video game tournament, or host a glow in the dark birthday party… but Streetlight can! The way we see it, sometimes a friend can be the most powerful source of support. With respect to HIPAA patient privacy, I would love to answer your questions. Ask me Anything!
Feel free to check out our links!
Streetlight TED talk by our founder
Here are some of our different project teams:
Cystic Fibrosis Team
Sickle Cell Team
Other Patient Populations
My Proof: http://imgur.com/LqyRCtD
Why do you think more programs like this don’t exist in all hospitals? And what can we do to get that to happen?
We get that question a lot.
Managing a program like this takes a lot of resources. This kind of program challenges boundaries whereas most of healthcare encourages them. A lot of my job involves close contact with my volunteers and open dialogue to make sure they are feeling emotionally supported.
Additionally, one of the biggest challenges to starting and sustaining a program like this will always be funding. We are a non-billable service that functions predominantly on donations and grants.
At this link here, we have a wishlist of things, ranging from video games/systems to nail polish, that would enhance the program. Also we have a direct link on our website to give financially as well. This link allows anyone to donate securely online. We are so grateful to our donors. They are the reason we are still here.
I imagine many of the student volunteers for Streetlight don’t have much experience with death due to their young age. What does Streetlight teach them about terminal illnesses and on how to cope with the loss of their friends? And do you guys do anything for the parents of the patients as they cope with the illness or death of their child?
Loss is a huge part of life. When you interact with people in the sunset of their lives loss is bound to occur. We deal with death as a team. We have a mantra in Streetlight that is “We Get to Carry Each Other.” It is taken from the U2 song “One”.
Whenever we lose a patient friend we gather together as a team to do what we call a “Memory Share”. It’s not a religious ceremony, (although members are free to share any passages or song lyrics meaningful to them) but more of a time to celebrate that patient in the way we hope that patient would want. We uplift memories about that person. Recently we did a potluck-style memory share for a patient who loved to cook. About 6 months ago when we knew that he wouldn’t have much time left, one of his Streetlight friends began working with him on a collaborative Streetlight cookbook, including recipes he had written in the hospital and recipes from the Streetlight team members (family secrets and all). We presented the cookbook to him on his last birthday party in his home about a month before he passed. When we held our memory share we made recipes from the cookbook to share together in his memory.
For the families of our patients, we organize a “memory box” to be sent to each family 6 months to a year after each patient’s death. The team as well as the other hospital staff (physicians, nursing, social work, etc) write down memories and reflections and we enclose those in a personalized, decorated memory box created by one of our friends at UF Arts in Medicine. It’s a way we can extend our love and support to our families and let them know we’re still carrying them with us.
What’s a typical work day like for you?
Good question. Every day is completely different. It all depends which patients are in. My job is a mixture of preparing our volunteers and also supporting our patients myself. When I get to work, I pull up the medical charts of the teenage and adult patients and check out what’s going on with each person. That starts the trajectory of the day. Later in the day our volunteers come and we hold a meeting together to get them on the same page with who is in the hospital and how we can best support each person.
Right now we’re gearing up to throw a Broadway-themed birthday party next week so we’ve been doing a lot of planning around that!
What do you do if a patient is not receptive to your program? I can imagine dealing with teenagers can be tough.
I explain to our team of volunteers that we never want to force a relationship on somebody. A lot of it comes down to timing and how that individual is feeling in a given moment. We always want to remember that there could be a lot of other factors as to why a patient isn’t receptive to Streetlight. They could’ve just been handed a really tough diagnosis and need to process that on their own, some patients are dealing with nausea, changes in appearance like weight gain from steroids, hair loss from chemotherapy, or they might just be tired of an onslaught of nurses and doctors coming in and out of the room and not feel like meeting a new friend in that moment. We respect wherever that person is at.
For some people though, it’s going back multiple times to prove that we’re not just another community service organization. I like the words of one of our volunteers who explains to patients “You can see as much or as little of us as you like”. It’s all about the person in the hospital bed.
What’s the most impactful thing you’ve done in Streetlight?
When I think about my most impactful experience, it’s not so much what I’ve done but what I’ve received from those efforts.
One of my most impactful experiences featured a 19 year old guy with cancer. I met him in his last 6 weeks of life and his one last wish was to receive a “Heineken Party” on his deathbed (We did not provide the booze and couldn’t drink with him of course). Myself and several other Streetlight volunteers went to his home for his last Friday night and spent the evening reflecting on stories of his childhood, watching Honey Badger YouTube videos, and laughing as we celebrated him with his family.
It was really refreshing to get to be a part of his last party and to know that death doesn’t always have to come with sadness. I still keep in touch with his family and we see each other when we can.
What’s a the coolest thing a patient has done for a volunteer?
Wow, great question. There are so many things that we gain from our patients. Each friendship is different so those gifts look different depending on the relationship.
We’ve had patients show up to our volunteers’ college graduations, weddings, make homemade scarves, bracelets, slippers, bring in cupcakes to Teen Lounge, write us cards, build us some awesome Magic The Gathering decks, World of Warcraft armor sets, teach us their signature dance moves, we cherish them all.
One of the coolest exchanges between a patient and a volunteer that sticks out in my mind was when one of our end of life cystic fibrosis patients asked a Streetlight volunteer to be a Maid of Honor at her wedding.
These really are actual two-way friendships.
How differently do the peers act as the age gets older?
We see an increasing dependence on peers throughout teenage years and early adulthood.
For some of our cystic fibrosis patients who may have to forgo mainstream school in lieu of online virtual school, their peer group can change significantly over time. When you’re away from that source of social support, the friends often lose touch. It gets difficult to keep those connections when you don’t see those people every day during class, but the social need is still there.
And that’s where Streetlight comes in. Our volunteers commit to a minimum of 2 years to the program which allows long-term relationships to form. Some of our volunteers have been involved with Streetlight for 6 years now. Understandably, these friendships grow in richness with time.
You mentioned that movies and TV are often off not in line with the reality of supporting young and chronically ill patients. Is there any media (books, movie, tv, etc.) that you think accurately portrays the reality of support groups such as the Streetlight program?
Great question. I should say that I do think both the Fault in Our Stars and Red Band Society hit on some important truths, like the human need for social support. We need more of this, even if these examples don’t depict 100% reality.
I agree with the other comments that 50/50 gives a nice look at dealing with cancer at a young age. It has become part of our Streetlight required viewing. It’s sarcastic and irreverent, right on point with our age group. I also think the movie, The Invincibles, is a great film that captures the kind of support we do in Streetlight. It’s the kind of support does not fit in the lines of a typical “support group.” The movie is in French, so watching the subtitles is key. 😉
I also enjoy reading books and other media created by those who are actually living with a chronic illness. “Breathing for a Living” by Laura Rothberg gives a nice look at living with cystic fibrosis. Always searching for other good reads!
What is the most challenging aspect of volunteering with Streetlight?
Before directing the program in a staff capacity, I served as a volunteer when I was an undergraduate UF student.
One of the biggest challenges as a volunteer was managing time with patients. As a Streetlight volunteer, you’re only required to serve 3 hours weekly but you usually want to stay in the hospital and be with your patient friends much longer. Many would think that these intense emotionally heavy situations would drive someone away, however those of us in Streetlight feel the opposite. It can be challenging to balance other non-Streetlight aspects of life when you feel such an immediate and compelling desire to be with those people at the hospital.
How do you help kids deal with survivor’s guilt? My nephew is a Ewing’s sarcoma survivor and he’s had 3 or more friends die every year since going into remission. It gets to the point where he just can’t deal with seeing someone once they start getting thin and pale.
I think a lot of people I know with your nephew’s experience would feel the same way. Living with a disease, and seeing friends die from that disease, is something we encounter in Streetlight. We hold a Teen Lounge where our patients have the opportunity to leave their rooms and get to know each other, so when someone dies it is felt. I know some patients that intentionally distance themselves from others with the same illnesses, because it hurts to watch a friend die, and also because it calls their own mortality into reality.
We are not counselors, but in every way a friend can, we grieve with our patients, talk through our thoughts, and reframe a sense of meaning. If someone doesn’t want to come out to Teen Lounge and be around other patients, then we don’t force it, but our team of volunteers is definitely following up with that patient. Coping is a unique process for each individual, but all typically include helping each other make meaning of our own individual purpose, identifying the worth in those still living, and celebrating those whom we lose.
Streetlight looks like an amazing program, and the kids must really appreciate all that you and the volunteers do for them. What would you say is your favorite memory since joining Streetlight?
Wow. That is tough. Reflecting on my Streetlight experience is like looking at a precious stone, and viewing the facets from different angles. No one facet is better or worse, just depends where you are standing.
To even BEGIN organizing my thoughts, it helps me to think back on this video, our images of the year video from the last year.
A cool event that isn’t in the video was when we threw a personalized prom and later graduation for one of our heart transplant patients. This patient had to miss out on her entire senior year to wait at Shands for a heart transplant. When her graduation neared, we knew we had to do something special to celebrate the milestone. While the rest of her senior class gathered at an auditorium in Jacksonville, we worked with our IT department to virtually patch her through to her graduation ceremony. Dressed in full graduation regalia in a conference room we decorated at Shands, she held an iPad and FaceTimed her sister holding an iPad at the graduation ceremony in Jacksonville. When the principal called the patient’s name, her sister walked with the iPad showing the patient’s image across the stage. Meanwhile, back at the hospital, we broke every hospital noise ordinance as we cheered to celebrate our patient friend. After the ceremony, and according to the patient’s wishes, we held a 2 hour dance party with her Streetlight friends and family members in attendance.
Every person makes meaning in a different way, and that day we tried our best to bring the graduation to her. ABC actually covered our efforts and you can watch the video at this link.
What made you to do an AMA?
When people think of pediatrics, they often think of younger school aged-children. A BBC article once referred to teens living with chronic illnesses as a “forgotten tribe.” Streetlight focuses on an age group that does not receive the same media attention and programs as others. I hoped to raise awareness for a marginalized group, and to share a little about what we do.
And bigger picture, companionship is integral to the human experience, with or without a chronic illness. I hope everyone will take the Streetlight model of support and take time to reach out to their friends going through something. You do not have to be in Streetlight to carry another.
Are kids able to talk about the fact that they’re dying without panicking? How do you approach sensitive topics like these? Was there any particular patient that changed your life? Do dying patients get jealous if someone is cured?
Everybody faces death differently.
In Streetlight, we compare partnering with someone through end of life analogous to learning to dance for the first time. That person’s never died before so they are learning and we are learning how to be their friends. Sometimes you step on each others’ toes, but you’re always following the lead of that patient.
For this age group, pop culture can be a conduit to opening up a conversation about life and death. For one of our guys with end-stage cancer, we made him a book of song lyrics from his favorite musician, Dave Matthews, that helped him process and frame some of his thoughts.
In any relationship, people feel more comfortable talking about personal matters with those whom they trust. In Streetlight, many of our patients and volunteers have had several years to form a trusting relationship that precipitates these kind of end of life conversations.
In a previous question I spoke about a patient who taught me invaluable lessons through his end of life experiences. Our founder said it nicely in her TED Talk that death has a way of accelerating love and intimacy and it is a privilege to get to partner with someone through that sacred time. Regarding if patients become jealous when someone else is cured, I can’t speak for anyone other than myself. In this job I’ve learned that you can’t presume to understand something you’ve never walked through yourself.
What would you say was your motivation for getting involved with Streetlight? Also, what is one way you think the program could be changed/improved?
When I was an undergrad UF college student, I thought I would be a lawyer. Transcendentalists like Henry David Thoreau and Ralph Waldo Emerson inspired me to pick up an English major; I wanted apply my communication skills toward a greater cause.
During my time of discernment, a good friend of mine began volunteering with Streetlight. She shared with me her life-changing stories, and I wanted in. I served as a volunteer throughout the rest of undergrad, but I knew that I wanted to make this my life’s work, so I approached our founder. Due to a generous donation, I joined the staff full time after graduation to begin writing about the program for a Streetlight book. We still haven’t written the book, but that opportunity led me on a path to leadership. Directing this program is a profound privilege, and I am grateful for each step that led me here. Thanks for giving me the opportunity to reflect!
Hey, I apologize that I missed the second part of your question regarding what could improve the program. With more staffing and financial resources we could more adequately meet the needs of our patients. With only two full time employees, there are limitations on scope of the support we can provide.
What advice do you give to your volunteers on approaching teenage patients utilizing Streetlight for the first time? Are the patients usually apprehensive about the program at first, or do most appreciate the support?
We give our volunteers about 8 hours of training before they even see a patient, and they are shadowing an existing team member for about 2 months, however even with all of this prep, initiating a conversation with a stranger can be intimidating.
Something we engrain in our volunteers is that “it is not about you.” So, if a patient gives you the cold shoulder or asks you to leave, don’t take it personally. There could be a number of situations explaining why that individual does not feel like a visit. And so we respect it. The next time may be different.
In any event, approaching someone with sincerity, without self-righteousness, is always the best way. Thanks for the question!
What are the inclusion criteria for patients?
The patients we see are typically between 13-25, who we meet initially at the hospital. They are patients that come in under the pediatric service, however we do continue to visit our patients when they transition into adult care. With a physician’s referral, we also see patients in the community as well, through home visits and group outings.
In Streetlight we have specialized support teams for our patients living with cancer, sickle cell, cystic fibrosis, and those awaiting organ transplants. We’ve found that people living with these illnesses face a unique set of challenges. Streetlight volunteers have the opportunity to join one (or all) of these support teams. Some of our volunteers live with chronic illnesses and want to apply their experiences to support others.
What do you find is the most helpful thing for a patient in terms of the support that you guys give?
Effective support depends on the person. In Streetlight we say that everyone spells the word “comfort” differently, meaning that what is comforting to you may be different than someone else.
Ultimately, it comes down to restoring a sense of dignity threatened by the hospital environment. Our patients have to deal with a loss of control; there are no locks on the door and rigid treatment regimens leave little room for choice. One of our patients recently told a physician (while I was in the room) that he loved that he could unleash his anger on his Streetlight friends because he knew that they were the only entity in his life that would not push him away for giving an attitude. So to answer your question, think the most helpful thing we could do, is be what that person needs us to be.
Any plans in expand this program to another states or countries?
We would love to see this kind of age-focused peer support in every hospital. I know the program would need to be tailored to each institution individually. Thinking about the program in different countries is a fantastic idea. Streetlight is a model of palliative care. Some countries like England and Ireland embrace palliative care more openly in their healthcare system. I could see a program like Streetlight doing very well in that culture.
What do you think of Stupid Cancer’s Instapeer app?
I had never heard of this until you alerted me- thanks! I have always appreciated Stupid Cancer’s org and how they dialogue in a refreshingly raw way. Not sure how they verify if someone actually has cancer, but people are comfortable using apps, and one on one anonymous conversation is a whole lot less intimidating than walking into a support group.
Apps are turning into a cool platform of support. The F*** Cancer App, Stand With, is worth checking out if you aren’t familiar with it. It is the answer for anyone who has ever had to deal with the question “How can I help you?” Basically, you send out a request, like, “I need a hand with my laundry today,” to a person or group that you create. Then, people have the option to respond without the pressure of answering on the spot to a phone call. You can argue that apps add distance to communication, but they can also allow a conversation to occur that otherwise may not.
Have you considered collecting any survey data to quantify outcomes for the people you help? I would imagine demonstrating that this improves quality of life would do a lot for guiding efforts of others trying to make a difference in this group of young patients.
Collecting data would be invaluable. The UF Center of Spirituality and Health conducted a study on our volunteers, past and present, to determine their changed perspective, however we have not surveyed patients thus far. To do so would involve resources beyond our two full time staff members. The other barrier is that some patients are in such a vulnerable/ critical state during their hospitalization that surveying would be inappropriate. Collecting data is definitely something that would enhance the program though, we just need the staff, time, and financial resources to do it the right way.
I am a survivor of depression. If I knew what I know now, I wish I gotten help earlier. Since I couldn’t tell anybody for fear of being embarrassed or laughed at. I sometimes have good and bad days, but it is never as bad as it was for me all those years. How do you help those people who feel afraid to talk to someone about it? What is the most recognized pitfall that people have when getting out of depression and how it can be avoided?
Thanks philckd for speaking to what a LOT of people are going through. As you know, there is not one magic cure for depression. In Streetlight, we carry each other through the power of relationship, non-judgmental and without expectations.
Not everyone is cool with talking about their issues at first. For some of our teen patients, males typically, video games can be an extremely powerful source of support. In Streetlight, we have the Streetlight Gaming League where volunteers and patients can connect outside of the hospital through Xbox, PS3/4, and even cell phone apps. Just the presence of someone who cares, even virtually, is significant. It’s about not going it alone. Isolation is a real issue in this age group, especially when you add a chronic illness into the picture. Coupled with professional counseling, I hope that our authentic friendships can help serve as a buoy when things get rough.