Annual Brief 2020
“Although the world is full of suffering, it is also full of the overcoming of it.”
― Helen Keller
Preparing our end of the year newsletter is always a very special time of reflection for me as I try to frame for you the sacred and significant memories that comprise our year of Streetlight support. Our impact as a program relies on the spirit of our patients, the support of our coworkers in medicine and partners in the community, and the service of our volunteers, who we affectionately call, “Streeples.”
This year dramatically shifted our programming; although Streetlight staff continued to provide inpatient support, March brought new hospital safety policies limiting volunteer presence inside the hospital. Through these changes, we adapted and found new and creative ways to safely connect with our patients during their challenging healing journeys. Our patients teach us resilience through their daily decisions to persist and endure, and inspired by that effort, we have tried our best to rise and grow our support through all available spaces.
Our beloved staff member, Drew Walker, planted the seeds for the Streetlight Gaming League in 2017. Three years later, we have a vibrant community of 70 patients moderated by 50 volunteers and staff who participate in weekly events, like traversing through the virtual landscape of the world of “Luneria” in our 9-month Dungeons and Dragons ongoing session, sharing movie commentary through voice chat in our weekly Streetlight movie streams, and gaining points and prizes in our summer-long Creativity Challenge where patients submitted their responses to cooking, art, and poetry prompts.
This year, Ricky Kendall, from Arts in Medicine, dedicated his cartoonist skills towards our community by offering virtual character drawing tutorials during the month of October. We are so grateful for his time and amazing talent!
The Streetlight Gaming League has become more than just a chat group to facilitate game play: it is a trusted and safe space where individuals can share their identities that encompass both medical and nonmedical components amidst an encouraging group of peers. Now, we have the structure to allow patients to connect with each other and share their thoughts, wisdom, and goals. Through our Steering Committee, a leadership group comprised of patients, volunteers, and staff, we are continuing to evolve our community to better support the needs of our patient population both inside and outside of the hospital.
SICKLE CELL AWARENESS MONTH
To bridge the physical separation between our volunteers and patients, our committed volunteer Streetlight Sickle Cell Team worked together to provide our sickle cell patients with handwritten support letters during September Sickle Cell Awareness Month.
Led by Sickle Cell Team Captains Christiana Verdelus and Logan Locascio, the team wrote personalized letters for their patient friends that were then transcribed by Christiana in beautiful handwritten lettering and delivered to the hospital so that our Streetlight staff could deliver to their recipients.
Being admitted for a pain crisis is excruciating, but even more agonizing without the same opportunities to have visitors. Our hope was to show our sickle cell patients that we continued to carry them in our hearts and offer encouragement in the absence of holding in-person volunteer visits. As a way to extend our awareness beyond the hospital room, we shared educational infographics made my volunteer Sydney Somers on our Facebook page. In addition, our volunteers created a collaborative video to share their thoughts and advocacy. We want our sickle cell warriors to know that we celebrate their strength and endurance in September, and throughout the year.
Although many hospital operations either changed or adapted throughout 2020, patient care still prevailed, evident in our celebration of 10 cystic fibrosis patients who successfully transitioned to UF Health Adult Care!
To celebrate these patients, we created the CF Transition Yearbook, a book highlighting each graduating patient with a biography, and showcasing inspirational quotes and pictures from their compassionate pediatric providers, as well as “about me” quotes and pictures from their enthusiastic adult care team. We thank each of our patient graduates for trusting us to tell their meaningful stories through this significant milestone.
WELCOME OUR NEW ASSISTANT DIRECTOR!
Streetlight is a program designed to offer empathetic companionship to chronically ill patients through cure or end of life, but to holistically, respectfully, and insightfully offer the best palliative care support possible, we must have a dedicated leadership unit. From my time graduating from my own Streetlight volunteer role at UF and becoming staff in 2011, I have had the privilege to work with amazing individuals who all preceded their Streetlight employee status by serving for years as a volunteer.
One such example is Anna Swygert, who we welcomed into the role of Streetlight Assistant Director this year! Anna served as a Streetlight volunteer from 2015-2017, and then attended Emory University where she received her Master of Divinity in 2020. Anna is passionate about spiritual care, community building, and storytelling, and how they become embodied in holistic health care.
Anna was integral to the design and execution of the CF Yearbook, and she has also provided leadership over our Streetlight E Learning page where we share weekly discussion posts with our volunteers to simulate the weekly in-person educational discussions that we host preceding volunteers’ hospital service shifts.
Without the in-person meetings, we determined that continuing these weekly educational pieces with opportunity to dialogue was important to maintain the community and connection within our team. Our goal through these articles and videos is to cultivate critical thinking skills and increased bio-psycho-social understanding in our pre-health volunteer population.
We believe that by investing in our volunteers’ education surrounding patient care before they begin professional school, their Streetlight support will be enriched, as well as their long-term professional care.
We hope that any good we do in Streetlight at UF Health Shands Children’s Hospital can be continued, improved, and recommended through on-going research. This year we celebrate the emergence and culmination of several important research pursuits. Drew Walker, who previously served as our Streetlight Assistant Director, is now pioneering a new role as Streetlight Clinical Data Analyst while achieving his PhD in Behavioral, Social, and Health Education Sciences. He is creating several behind-the-scenes programs to help us track our patient support delivery, analyze Streetlight Gaming League user involvement, and enhance our database of patients and volunteers that can support future funding. Drew’s work is making a future of program scalability possible, and we are so grateful for his empathy as a Streetlight staff member and proficiency as a data scientist.
Additionally, Dr. Lindsay Hebert of Johns Hopkins University just successfully defended her doctoral dissertation thesis titled, “Evaluating Strategies to Address Quality of Life and Health Related Quality of Life among Chronically Ill Adolescents in the Inpatient Setting.”
This is a reflection from Lindsay on the process:
“I was thrilled that a small team of researchers at the University of Florida offered for me to journey alongside them last year, taking a closer look at Streetlight from the perspectives of the patients, the clinicians who care for them, and hospital leadership. Spoiler alert: their insights are very compelling and overwhelmingly positive! My hope is that this work will serve as a launching point for scaling and spreading the Streetlight model to children’s hospitals across the country.”
And finally, we are excited for an IRB study titled, “Investigation of Social Support Among Adolescent and Young Adult Palliative Care Patients Using an Online Gaming Network from the Patient Perspective” from UF Public Health PhD Candidate, Kelsea LeBeau. Kelsea is conducting interviews with our Streetlight Gaming League patients to assess their user experience. This is an important time to research the efficacy of Streetlight Gaming League during this period of increased social isolation due to Covid-19, layered on top of existing social isolation experienced by many teenagers and young adults living with chronic illnesses. We give thanks to Kelsea for her dedication throughout the implementation of her study, and we look forward to her results in 2021!
Thank you for taking the time to read our end of the year reflection. We are so grateful to everyone who has helped carry our program, and more specifically, all of you who have supported our efforts to provide loving care to our patients and community. For everyone, 2020 has been a practical application of resilience, and we are grateful to practice that within such a loving and supportive community. In the words of former Navy SEAL, Eric Greitens, “No one escapes pain, fear, and suffering. Yet from pain can come wisdom, from fear can come courage, from suffering can come strength – if we have the virtue of resilience.” Our patients understand the plight of indeterminate seasons of pain, fear, and suffering, but in that state of uncertainty, they also allow us the honor of giving and exchanging love and friendship. We carry that privilege as a treasure.
We wish you and your families a warm and rejuvenating holiday season and look forward to a wondrous new year of hopeful possibilities.
Streetlight is funded entirely by grants and private donations. If you would like to support the Streetlight program, please click the button below.