Shawn Shortridge sits on the bed in his intensive care unit hospital room with the door wide open.
“I leave it open so I won’t feel like I’m invisible,” Shortridge says.
The room is filled with beeping monitors and the sound of his labored breathing. Depending on the time of day, vibrations can be heard coming from his intrapulmonary percussive ventilator machine or from his chest percussion therapy vest. Both help keep his airways open so he can breathe.
Shortridge has cystic fibrosis. He was diagnosed with the disorder at birth and has been battling it ever since.
Most days, however, he chooses to focus on a different type of battle. Sitting on the chair next to him is a stack of video games and controllers. His favorite game right now is Injustice 2 for the Xbox One.
Smiling as he plays, he takes off his oxygen mask to declare that his favorite activity is “whooping Streetlight volunteers’ behinds.”
Streetlight, a peer support program at the University of Florida Health Shands Hospital, trains volunteers to work with patients aged 13 to 25 who are being treated for a wide range of diseases, including cancer, sickle cell disease, cystic fibrosis and neurological disorders.
Founded by Rebecca Brown in 2006 after a member of her youth choir was diagnosed with cancer, Streetlight is part of a growing number of hospitals addressing unique emotional needs of patients by providing companionship and normalcy. The program currently has about 60 college-aged volunteers.
There are approximately 1,000 new cases of cystic fibrosis diagnosed in the United States each year, according to the Cystic Fibrosis Foundation. About 470,000 children live with epilepsy as of 2015, according to the Centers for Disease Control and Prevention. If a K-12 school had 1,000 students, six of them would have epilepsy. And about 5,000 15- to 19-year-olds and 60,000 people 20-39 years old are diagnosed with cancer each year in the United States.
These patients tend to face other hardships in addition to their medical conditions due to the significant life changes that occur during adolescence, according to the American Cancer Society. This has led to the increased use of what the medical community calls palliative care, which focuses on the patient’s quality of life.
Dr. Clarke Anderson, a pediatric oncologist and hematologist at City of Hope, a comprehensive cancer center in Duarte, California, says adolescents and young adults can be seen as the “lost tribe” in both oncology and palliative care.
“Even though you’re sick, even though you’re dying, you’re still a developing human being,” Clarke explains.
Clarke explained that where pediatricians specialize in younger children, and surgeons or internists treat adults, there is no medical specialty for treating young adults, who have completely different emotional and social needs.
When patients like Shortridge are confined to a hospital for extended periods of time, they do not experience typical adolescent environments, such as school or extracurriculars, which foster healthy social and emotional development.
Streetlight volunteer Gillian Mangan understands just how tough that isolation can be.
During the fall of her freshman year at UF, Mangan was hospitalized after having six grand mal seizures within three months. Grand mal seizures cause a loss of consciousness and violent muscle spasms and are considered rare.
Mangan was sent to the Shands Hospital Epilepsy Monitoring Unit (EMU) for a week. In the EMU, referred to by patients as the “Epilepsy Torture Unit,” doctors induce patients to have seizures so that they can understand the causes and magnitude of each seizure.
Mangan recalls being in a daze those three months. Beyond the physical pain, she said she was tired of feeling cut off from her friends and family.
So when the Streetlight volunteers showed up during her first night in the EMU, it was a huge relief to be able to think about something other than her epilepsy.
“They were my age and they weren’t coddling me,” Mangan says. “The idea of having this peer-to-peer relationship in the hospital room made me look forward to the next day.”
While neither of the volunteers could personally relate to her condition, they could offer Mangan comfort through their company.
“It can be so monotonous in the hospital, so being able to converse about the YouTube video or hilarious meme I found was really exciting,” Mangan says. “Streetlight let me be myself and remove the stigma of epilepsy.”
Before his first visit from the Streetlight team, Shortridge says it had been a long time since he had been around people his own age. He was treated in the pediatric department until he was 21.
Andrew Walker, Streetlight’s assistant director, says patients often can forget the side of them that is not sick when so much of their attention is focused on symptoms, tests and treatment.
“The mindset of being sick makes you forget about the part of you that’s not the patient,” he explains.
Hospitals that combine scientific and humanistic approaches can help young patients maintain a positive self-concept while they are adjusting to their illness, treatment and the hospital, according to a study published in a 2007 issue of Health Science Journal. Research found that without this approach, seriously ill children suffer from low self-esteem and are less satisfied with life.
“Adolescents and young adults are old enough to be aware they might not survive their disease,” said Jeanette Folbrecht, a psychologist that works at City of Hope. “Their increased feelings of grief, fear and loss can be mediated by palliative care.”
Although located on opposite sides of the country, both City of Hope and Streetlight offer innovative and inclusive palliative care for adolescents and young adults so the patient’s family can interact with the young adult as they did before illness struck.
Clarke and Walker agree that a systematic evaluation of their programs would support what they firmly believe: adolescent and young adult palliative care is imperative for patients facing serious or life-threatening diseases.
“It’s been tough to quantify the power of this community and all of the awesome memories that have been made as a result, but it’s why this research is so important,” Walker says.
For the past year, Streetlight has been involved in a study on patient outcomes with Ana Puig, a scholar and researcher in the Office of Educational Research at UF’s College of Education. The study is designed to evaluate how Streetlight affects patients’ quality of life and their experiences with the program.
Eric Richardson, a Ph.D. student in UF’s College of Education who is helping with the research, said the study will include both quantitative and qualitative data.
Patients participating in the study complete a survey on quality of life and the services Streetlight provides. Ten to 15 of those patients will also participate in structured interviews.
The study results won’t be released for at least six more months, but Richardson acknowledges the impact he sees firsthand.
“I’ve been able to hear stories directly from the patients about the impact Streetlight has made on their life,” Richardson says. “It gives them the opportunity of additional and unwavering support.”
Now a junior, Mangan volunteers with Streetlight, and even though she has shifted roles, she said the program is still helping her.
“They might not ever say it to you as a patient, but it’s the kind of medicine that transcends the idea of healing and becoming more whole,” Mangan says.
Streetlight’s primary limitations derive from a lack of funding. The program depends on donations and grants, such as from the Children’s Miracle Network, but these are not guaranteed year-to-year.
“We are constantly faced with the questions of ‘What can we do more?’ and ‘How can we sustain that?’” Walker says.
The latest addition to Streetlight’s efforts is a new platform where patients play online games together. Patients can play together in virtual communities, and with the help of their avatars, they can forget about their physical disabilities. Connecting online through their favorite games should help reduce the emotional isolation young people experience in the hospital, Walker says.
This online platform enables Streetlight to offer support that goes beyond in-person visits.
“There are people like our friends we’ve met in Streetlight who have to undergo lengthy and frequent hospital stays all over the world who love gaming too,” Walker says. “My hope is that one day this community can reach them as well.”
Shortridge has been helping Walker with this new gaming league. He helps choose what games will be offered, what challenges can be added and what bragging rights the winners will get. Both love video games and spend their time together bonding over them.
“When Streetlight comes to visit me, it’s like family is coming to visit,” Shortridge says. “Drew [Walker] is like a brother to me… and I’ve never had that before.”