Providing comprehensive family-centered pediatric oncology care

By BeckyLynn Schroeder

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Noah Edgar and his parents traveling to Jacksonville from England for treatment.

Traveling to a different town, state or even country to receive treatment for their child’s cancer is a difficult experience for any parent. Extra pressure is on parents who must navigate unknown waters in an unfamiliar place often without their support system at home. Recently, published research shows that while traveling to receive proton beam therapy is not without difficulties, the programs and resources available in the United States are clearly helpful in facilitating the adjustment and turn what could be a negative experience into a positive one.

The article “The ‘radiation vacation’: Parents’ experiences of traveling to have their children’s brain tumors treated with proton beam therapy” discusses insights from research on the experiences of parents from the United Kingdom whose children have had brain tumors treated with proton therapy in the United States. Data analyzed from participating parents, many of whom brought their children to the UF Health Proton Therapy Institute, suggests that the time during proton therapy appears more positive than the periods before or after it. These findings are remarkable and contrary to previous research that suggests the time during cancer treatment is psychologically hardest for parents.

The findings expressed in this article reflect testimonies from parents with children being treated at UF Health Proton Therapy Institute and validate the investment we make in our pediatric social services program. We know that pediatric tumors and cancer impact the whole family, which is why we are focused on providing holistic family-centered care. The UF Health Proton Therapy Institute employs a full-time Child Life Specialist who focuses on the well-being of each child throughout treatment. Behind-the-scenes pretreatment tours, age-appropriate videos, activities and interactive iPad applications help children feel more comfortable before their treatment and eliminate surprises and anxiety from both the patient and the parents. Ongoing psychological assessment and supportive counseling is provided by our dedicated pediatric social worker in addition to school advocacy, and a vibrant adolescent and young adult program.

Aside from professional support, the article also found that social interaction and distractions with other families are an important part of finding benefits during treatment. With 90 percent of the children treated at UF Health Proton Therapy Institute coming from outside of Jacksonville, including a large number from other countries, providing resources, organizing outings, family dinners and programming for pediatric patients and their families is a large part of the focus our team provides alongside cutting-edge cancer treatment. 

Over the past 10 years, the UF Health Proton Therapy Institute has treated more pediatric patients than any other proton center in the world. Our goal for the next 10 years and beyond is to continue to provide the highest standard of care across every spectrum and to help all that come through our doors have the best possible experience throughout treatment and beyond.

About This Newsletter

The Precision Newsletter is an electronic-only publication that is distributed by email. Each issue is sent monthly to patients, alumni patients and friends of the University of Florida Health Proton Therapy Institute. As the official newsletter of the Institute, the content is compiled and prepared by our communications representative and approved by the editor Stuart Klein, executive director of UF Health Proton Therapy Institute. Special bulletin newsletters may occasionally be prepared when timely topics and new developments in proton therapy occur.  We will make every effort to remove your name from the list. If you would like to send a Letter to the Editor, please click here.

 

Keep In Touch

It is easy to stay in touch with us online at floridaproton.org . Look at the top right corner of the homepage for Facebook , Twitter and YouTube icons, click and join us in the social media conversation. Also on the right side of the homepage there is a button for VTOC Patient Portal . Click here to open your secure account, view your records, complete clinical trial questionnaires and communicate with your nurse case manager.

 

Knowing how you are feeling during and after treatment is essential to providing you the best care possible and contributes to the care of future patients.