Posted by Ashish Patel on April 25, 2018
I’m Dr. Ashish Patel, Director of the Southwestern Pediatric IBD Center at Children’s HealthSM and Associate Professor of Pediatrics at UT Southwestern. As a physician, I’ve seen firsthand how important it is for patients and their families to have a positive, supportive partnership with their care providers.
To establish this relationship, patients and parents need to feel comfortable asking their care team questions and have an open line of communication about IBD. A psychologist – a critical member of our care team – shares insights on the emotional impact of IBD, along with tips and techniques to help kids better cope. We also offer one-on-one psychological support as part of the IBD care team to help engage and empower patients and their families.
Our pediatric IBD program offers a wide variety of engagement opportunities here at Children’s Health. For example, we know that therapeutic yoga teaches kids alternative techniques to help control IBD symptoms, such as pain, discomfort and anxiety. We have engaged yogis in our community to interact with our patients and families through educational and support group events.
Our mission is to connect our families with resources in the community. These programs and events extend our support beyond just medical care and help us foster connections with and between our patients and their families. Some of these include:
- Support groups - Support groups that meet regularly and provide the opportunity for kids and teens to enjoy themselves are so important. Being around others who understand their condition is reassuring and stress relieving. Our families have fun together, and one of our highlights last year was attending a Dallas Mavericks basketball game together.
- Social media support - We have a private Facebook page and Twitter feed (@utsw_pibdcenter) that help us all stay connected. I use this forum to send out updates, hold group support chats and share documents, such as camp applications.
- Education nights - Held twice a year, each educational program provides helpful information to patients and families. Keynote speakers and resource tables bring families together for a fun, informative, interactive event that always has a fun theme.
- Camp Oasis – Participating in typical activities, such as going to summer camp, can be stressful for kids with chronic digestive conditions. Camp Oasis serves children with IBD – giving kids a great summer camp experience without the worry of a flare-up. Camp Oasis has a full, on-site medical team to support kids while they’re at camp. I serve as Medical Director and it’s always the highlight of my year. There are Camp Oasis locations throughout the country.
- Runs and other active events - Children’s Health partners with the Crohn’s & Colitis Foundation to sponsor teams at various family-friendly walks – ranging from a 5K to a half marathon. I will be personally walking alongside many of my patients and their families in the upcoming Dallas Crohn’s & Colitis walk. The Foundation has also held spin events, “walk for a cure” events and “climb for a cure” events.
- Parent Chat - In addition to our patient support programs, we also offer ways for parents to get involved. The first outreach program that Children’s Health launched for IBD, Parent Chat, started with approximately five mothers of kids with IBD. These moms wanted a support system, and access to education and a place where they could ask questions. We’re involved in a variety of programs with Parent Chat. Some are medical education-based, several are nutrition dietitian-led and diet based. We also invite high school and college counselors to speak to families about resources available to kids through each step of their education.
If any of these programs sounds interesting to you, I encourage you to ask your care team if there are similar programs offered in your area. Most of our fellow ImproveCareNow members offer similar types of support and engagement opportunities for patients and families.
Beyond medical care
At Children’s Health and UT Southwestern Medical Center, we’re committed to the delivery of comprehensive care – and to us that means medical, emotional, educational and advocacy. A chronic illness like IBD impacts virtually all aspects of life, and we are here to support our patients in all those ways.
Establishing strong relationships with your care team, as well as with other young people who are also managing IBD, is an important component of the care experience. Remember that your care team is there not only to treat you – but also to support you on your journey. It’s a privilege for us to be able to do so.
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