Pediatric & Parent Support Groups – IBDSF strives to decrease social isolation and increase support by providing a peer group that shares similar struggles and frustrations of living with IBD or parenting a child with IBD.
We hold monthly support groups for children who have IBD. These groups are facilitated by IBDSF staff and trained volunteers who are living successfully with either Crohn’s Disease or Ulcerative Colitis. Children talk about everything from school and the latest movies, to their fears about hospitalization and the difficulties of medication compliance. Discussions are guided by facilitators to help improve the participants’ understanding and acceptance of their disease and its impact.
Parents of any-age child with IBD can also attend a monthly support group. These groups are designed to help improve understanding and acceptance of the disease and its impact. Parents gain education and share stories, coping skills and strategies for raising children with the unique challenges that IBD brings.
Campus Connection – These support groups for young adults in college enable growth and coping skill development among college students, who often face juggling the many unique challenges of school, work, relationships and disease.
Adult Support Groups – It is common for individuals living with a chronic illness to feel isolated and alone. The adult support groups are designed for those with IBD in their 30′s and 40′s. Meeting monthly, these groups focus on issues that affect adults – balancing family, work, and social activities while living with IBD.
Crisis Management – It may occur upon diagnosis, during an unexpected flare or hospitalization, or while facing daunting medical decisions such as surgery. During stressful times IBDSF staff can provide support to help patients and families process the crisis. We have trained social workers who help guide patients in areas of decision making and problem solving. Our goal is to alleviate anxiety, maximize the patient experience and help the patient regain balance in their lives.
Individual & Family Counseling – Life with a chronic disease can have an enormous impact on the patient and their family. They may feel like there is no one to turn to for advice or guidance. When patients need psychosocial assistance beyond that which they receive in our traditional support groups and programs, IBDSF offers confidential counseling services.
Medical Coordination & Liaison – Setting up appointments, registering at institutions and accessing medical records can be overwhelming, especially when patients are unfamiliar with the process or simply have a lot to deal with in their lives. IBDSF staff can walk you through this process, facilitating and assisting where possible with the coordination of medical services.
Youth Leadership Initiative (YLI) – At a time when acceptance from peers is important, diagnosis of a chronic disease can be unsettling for the young patient. YLI is a unique program designed for patients between the ages of 8 and 18. Each month, participants take part in self-awareness exercises, teambuilding and advocacy activities. Through these activities, YLI participants take the pain and challenge of their disease and use it as a catalyst for growth as they become community leaders and give back.
Hospital Visitation Program – Being hospitalized can be a lonely and anxiety-filled experience. With appropriate emotional and psychological support, patients can have a more successful hospital experience and a better overall adjustment to their illness. Our Hospital Visitation Program provides that support. With the patient’s permission, trained IBDSF volunteers go into the hospital and spend time with the patients and their families. Generally, the volunteers share commonalities with the patients such as gender, profession, age or disease experiences.
School Advocacy – IBD can impact life at school. IBDSF can provide support to students in areas such as: disclosure to friends, teachers and staff, attendance, keeping up with homework and obtaining accommodations such as bathroom use during class. Our social workers can walk parents through the process of obtaining 504 status for children, formalizing the school’s obligation to provide each student with appropriate accommodations.
Diet & Nutritional Support – Many IBD patients wonder about the role of diet and nutrition in IBD. IBDSF refers those interested in nutritional support to a registered dietitian who specializes in IBD. Please reach out to us if you'd like more information about this referral.
IBD Kid Konnection – IBD Kid Konnection is a program where children of a similar age, culture and background are paired up to minimize the isolation that comes with dealing with Crohn’s Disease and Ulcerative Colitis. We seek to match teens and preteens with a peer who shares similar struggles, concerns, hopes and fears. Depending on their geographic region, kids are paired up in person, on the phone, via email and via Skype.
Peer Mentoring – Many people with IBD experience emotional struggles at some point – whether it is social pressure because they have the “moon-face” or acne side effects of steroids, or school pressure because they’ve been too ill be in school consistently and they are falling behind in their grades. Our peer mentoring program provides peer support, advice and encouragement to help people with IBD navigate through the challenging times.
Community Education & Events – IBDSF hosts activities and community events to provide education, awareness and outreach, in addition to offering brochures and other educational materials.
To obtain more information about our Programs and Services, please contact us.