In the ImproveCareNow Network, there is a saying "to share seamlessly and steal shamelessly". It is understood that when clinicians, researchers, patients and families work collaboratively - sharing what has been learned and developed - improvements in care and health for kids living with IBD can be accelerated. Resources shared on this page have either been created & co-produced by the ImproveCareNow Community (and labeled with a ⭐ ) or recommended by an ICN committee as important to share seamlessly.
This information does not constitute medical advice and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The full disclaimer applies to the tools and documents posted on this page.
Accommodations for Students (K-12 & Higher Ed), Employees & Everyday Life
Many patients with IBD experience difficulties in school, work and everyday life because of barriers such as frequent absences/extended sick leave, trouble concentrating due to symptoms, or needing to take time off for appointments, surgeries or procedures. Accommodations can provide individuals living with IBD extra support, flexibility and/or modifications necessary to help address these challenges.
💚 Download the Accommodations Toolkit - Full Resource (EN)
💙 Download the Accommodations Highlight - English
💚 Download the Accommodations Highlight - Spanish / español
College & IBD
Navigating the transition to college can be overwhelming, especially if you’re dealing with a chronic illness like IBD. This toolkit identifies resources to make the process less stressful. Whether you’re a high schooler, in college, or a family member, this handbook can help guide you through the process. Find information about choosing the right school, preparing for college, and surviving classes, dorms, and dining with IBD!
💙 Download the College & IBD Toolkit
💚 Download the College & IBD Highlight
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The Caregiver Coping Resource has been coproduced by members of ImproveCareNow (ICN) and the Autoimmune Liver Disease Network for Kids (A-LiNK), including the ICN Parent/Family Advisory Council (PFAC), ICN Social Workers & Psychologists (SWAP) group, and A-LiNK Connections. Throughout this resource you will read information compiled by both caregivers of children with Inflammatory Bowel Disease (IBD) and/or Autoimmune Liver Diseases (AILD) as well as psychosocial professionals (psychologists and a medical social worker) who work with pediatric GI patients and families.
This 164-page resource is broken up into helpful chapters, including how to navigate the joys & challenges of parenting a child with a chronic condition, how stress impacts health, the impact of a chronic illness on siblings, and much, much more!
Read the Caregiver Coping Resource
The following resources are recommended by the ImproveCareNow Clinical Committee. These handbooks & visit planners are tools to help you learn more about IBD and to plan for your next visit with your doctor and multi-disciplinary team.
- Health Maintenance for Pediatric IBD Patients - Digital Pamphlet
- Effective Partnering - Treat to Target form - Digital form to help you plan your visit at your next doctor's appointment
- Partnering With Your Doctor - Webpage
The Mental Health Provider Guide was co-produced by the Social Worker and Psychologists (SWAP) group and members of the ImproveCareNow Community. It is a four-page guide for families and youth living with IBD.
The Mental Health Provider Guide includes detailed information about the importance of addressing mental health needs as part of comprehensive IBD care, how to find and work with a mental health provider, and what to expect during mental health counseling.
As healthcare providers, we want our young adults to successfully navigate the health care system as independent individuals. The process of transitioning from pediatric to adult-centered health care should be seamless, and should occur when the adolescent or young adult is in a stable place, both physically and emotionally.
The Transfer Toolkit is a 10-page document collaboratively created in 2018 by the Transition-Transfer Innovation Community and reviewed by the Patient Advisory Council and Clinical Practice Committee. Developed by patients and clinicians together, The Transfer Toolkit includes sections that cover important skills and considerations for adolescents approaching the point of transfer to adult care, self-advocacy tips, and more. Each section also includes relevant patient narratives to provide encouragement and real-life advice.
LOOP articles
The Ostomy Toolkit was created by the ImproveCareNow Patient Advisory Council's Advocacy Taskforce in collaboration with the whole ICN Community. The toolkit is designed for and by pediatric patients who have had, or are having, ostomy surgery (resting or permanent ostomy).
The Ostomy Toolkit includes tips, tricks and personal stories about school, travel, supplies, playing sports, clothing choices, and how to tell friends. It's an extraordinary tool to help lessen fears about ostomy surgery and life with an ostomy, and to promote awareness and understanding.
Invisible illnesses, like Crohn's disease and ulcerative colitis, don't take time off for the holidays. Learning about what your friends and family members who live with IBD may be experiencing is a powerful way to demonstrate your caring and support, and to also include them in holiday plans in ways that work for them. Below we have shared resources related to IBD and special occasians.
- Holiday Stress & Eating - Blog post
- What I Wish you Knew about IBD and Holidays - Blog post
- What I wish you Knew about IBD and Holidays - Printable PDF resource
- Ramadan Tips for Fasting - Downloadable resource; in collaboration with the Crohn's & Colitis Foundation & South Asian IBD Alliance