Types of Teams
One on One Visitation
This is the core of the program – companioning with teens in the hospital. A visitation team goes into the teen rooms every afternoon, (Mon – Thurs 4 – 6, and Fri 2 – 4) with an offer to provide movies, play a game of cards, talk, make a ShandsSpace, give Mom & Dad a coffee/food break, hear their story and build a relationship with a teenage patient.
This shift happens every Monday, Tuesday, Wednesday and Thursday night (5:30 – 8:45 PM). There is no structured “one-thing” happening. Rock Band is pretty popular as is Guitar Hero, beading and crafts, Monopoly ( believe it or not!), and UNO. Our teens also just like to use the Internet. There is a Wii and a pool table. Yes, relationships are formed, but diversion is the key element. The therapy here is about forgetting the hospital for an hour or so. It is also about getting them to meet other teens who also are struggling with different and similar things.
Focused interest just seems to happen as you are working with Streetlight. You start to have a soft heart for one area or another, or you see a need and have an idea. And we welcome ideas!!! But focus groups do not work as well if you do not have that weekly relationship with your teens through shift work.
September is Sickle Cell awareness month. We try to plan UF, high school, and community events to raise awareness during this month. This year we had SC team members present facts about SC disease and read poetry at the Orange & Brew Poetry night. The team also painted the 34th street wall and gave out flyers to raise awareness around UF’s campus. We plan activities during Black History month (February) with area churches and UF student organizations, like ServeFest and Raise Your Voice Month. We are also trying to get regular meetings of the SC community and always need to raise money for gas vouchers and activities. Additionally we help support the transition process (to adult care) as it comes up.
- Visit the Stop the Sickle Cycle YouTube channel to inspirational stories of patients living with Sickle Cell disease.
Giorgio William and Shed-laure Richardson are our 2012-2013 Sickle Cell project leaders
This Project group has done amazing things in the area of Transition. In 2009, Michael Tudeen, John Pang, Jessica Greer and others, with the help of a generous donor, started a transition program (to adult care) that helps our patients feel better informed as they move into adulthood with their disease.
Our 2012-2013 CF project leaders are Sara Sapp and Cindy Medina.
Thanks to BJ’s Restaurant, we are able to offer a graduation dinner for the patient and their family with guests from both pediatrics and adult care. We also compose a yearbook for patients transitioning from pediatrics to adult care that includes inspirational quotes from everyone the patient knew in pediatric care, as well as “get to know you” information from the new hospital staff they will be meeting in adult care. The patients also write a personal bio and submit pictures to introduce themselves and reflect on their journey thus far.
Great Strides is a national event, sponsored by the Cystic Fibrosis Foundation (CFF), with one goal: raising money to find a CURE for CF. Streetlight supports the annual event, locally by sponsoring a Streetlight Team that walks in the event and raises money for the CFF. The CFF is one of the most efficiently run non-profit organizations in existence, and they are getting ever close to finding a cure. CF is a genetic disease affecting 30,000 people in the US and over 70,000 nationwide. If you are interested in joining our team to walk or helping raise funds go to : http://www.cff.org/Great_Strides/
To learn more about how the Great Strides walk has a local impact read “Ryan’s Personal Story”.
The CF team and patients with CF can have a “CF Special Ops” t-shirt. Just ask!
We like to celebrate patients’s End of Chemo with parties! Each End of Chemo party is tailored to the individual patient, down to the music, food, and guest list. It is up to the Streetlight cancer team to bring the positive energy, and we always have a great time! Patients also get a personalized bio or personality quiz. It is a privilege to be a part of such a landmark event.
We want to encourage and maintain connections with our kids back out on the “street”. We should help connect them with each other for advice, support and friendship. The cancer team focuses on building relationships with cancer patients throughout the entire chemo process, and if it comes to it, through relapse and end of life. Many times peers can fade away over months of a patient’s chemo regimen, and so Streetlight can be a powerful and consistent support.
We are also involved in Relay for Life, and fundraise throughout the year through donation nights at local eateries, roller skating nights, and basketball tournaments.
Our 2012-2013 Project leaders are Nick Albano, Kristina Fernandez, and Aly Samai.
Sometimes when a family is spending a lot of time bedside with their teenager they stop eating regularly or don’t want to leave the room for long periods of time to get food. There is only so much hospital food a family can eat! Our Streetlight Bakers use food as another way to comfort families going through a difficult time. Our team cooks homemade food that is brought to the bedside for our families. It is greatly appreciated. Our Streetlight Bakers also help provide food at other events like Memorial Services.
Outpatient Visitation Teams
This program strives to bridge the connection of social support between hospitalization and the time spent at home for patients who are frequently in and out of the hospital due to medical needs. In particular, we are serving outpatients who are between the ages of 20-24. People in this age group can become lonely for companionship because they have graduated from school and frequently have to pass their days at home alone. Due to their medical issues, these young adults are unable to engage in many of the other activities and jobs their peers take part in. Streetlight members sign up to be on an outpatient team in addition to their weekly shift work. The families and patients seem to really appreciate the home visits which might include watching a movie, exchanging favorite YouTube videos, doing crafts or accompanying a patient to a family party or Hippodrome play. We currently have seven different outpatient teams.
We hope to get more and more research going in three particular areas.
1) How is this Streetlight (an early palliative care experience) affecting students who are going on to medical school to become doctors?
2) Is the CF transition project making the move to adult care easier and more comfortable for the pediatric CF patient?
3) How can hospital admissions/pain management be improved for Sickle Cell Patients? And what can Streetlight’s role in that be?
Student Support Staff
- Sara Sapp-team management and supervision
- Nick Albano- technology, web resources and team supervision