Parenting a child with a chronic illness like Inflammatory Bowel Disease (IBD) can feel isolating for both the child and the caregiver. While the love and support of family and friends are vital, connecting with others who truly “get it” offers a unique and powerful kind of support: peer support. The Caregiver Coping Resource emphasizes the immense value of supportive connections for both children and their families.
Peer Support for Kids & Teens
Imagine being a child or teen navigating complex treatments, diet changes, or the unpredictability of a flare. It can be difficult to fully articulate this experience to someone who hasn’t lived it. This is where peer support shines. When your child is interested, connecting them with other young people who have chronic health needs can be immensely empowering, providing a sense of belonging and community. As one caregiver, Erin, found when her nine-year-old daughter was newly diagnosed with Crohn’s disease, attending an IBD camp was transformative. Her daughter returned home “animated and talking about all the new friends she met who were ‘just like her.’ She was empowered”. (Caregiver Coping Resource. 83)
Pathways to Peer Connection for Children and Teens:
The decision of when and how to seek peer support is entirely up to your child, and it is a conversation that should be ongoing. It’s okay if they aren’t interested right away; you can gently revisit the topic in the future, as their interest may change.
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Support Programs: The Crohn’s & Colitis Foundation (CCF) offers age-tailored programs such as:
- Camp Oasis (a one-week camp for IBD patients)
- The Power of Two mentoring program and IBD Kidz virtual meet-ups (ages 5-13)
- ICN Patient Advisory Council (PAC): The PAC is a great option for pediatric patients with IBD who are 14+
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Community Events:
- ICN hosts an annual Open House and a Live Online Community Conference to connect with our community – all are welcome to join (patients and parents/caregivers attend for free)
- The CCF offers walks, races, and MyIBD Learning educational days to build a sense of community
- Local Resources: Check with your child’s healthcare team for hospital or local peer groups.
Essential Support for Parents & Caregivers
Caring for a child with a chronic condition like IBD is a journey of immense love and strength; a role that requires remarkable dedication. Devoted parents/caregivers face many challenges and moments of exhaustion. Practicing self-compassion and seeking support can be essential to preserving well-being. Taking time for coping and self-care is not selfish—it is necessary for well-being and to build and maintain the capacity to help and care for sick children.
Building a Supportive Network and Accessing Professional Services
Connecting with Other Caregivers (Peer Support)
Sharing experiences with those who understand can be tremendously helpful, offering validation, strength, and hope.
Professional and Health-Focused Resources
Having a safe space to process complex emotions like fear, anxiety, grief, and guilt is vital.
- Mental Health Professionals: Therapy or counseling is an important part of healthcare. A therapist can teach coping skills, help you process feelings, and may recommend medication if needed for anxiety or depression. Check out the Finding a Mental Health Provider Guide from ICN Social Workers & Psychologists for helpful information.
- Healthcare Team: Ask your child’s medical team to connect you with resources like a parent mentor or a dedicated mental health professional.
- Caregiver Wellbeing Special Interest Group: They offer free, reputable resources on finding a mental health professional for parents and general coping strategies (connect on social media via “caregiverwellbeingspp”).
Practical Coping & Self-Care Strategies
Self-care does not need to take a lot of time; even a few minutes can make a difference.
- Mindfulness: Try “Joy Snacking” (finding small positive moments), diaphragmatic breathing, or visualization exercises to calm your mind and body.
- The “And” Technique: To foster realistic hope and resilience, replace “but” with “and” when expressing difficult thoughts (e.g., “This is scary and we can do this,” instead of “This is scary but we can do this.”).
- Personal Toolbox: Make a list of coping skills that work for you (e.g., listening to a favorite song, walking, praying) and keep it accessible for high-stress moments.
- Ask for Help: Remember life is not a solo sport. Ask your personal support team (partner, friend, neighbor) for what you need, like time for yourself or someone to vent to.
📌 Sources
ImproveCareNow and Autoimmune Liver Disease Network for Kids (A-LINK). Caregiver Coping Resource. ImproveCareNow, May 2025.
The Caregiver Coping Resource from ImproveCareNow (ICN) and the Autoimmune Liver Disease Network for Kids (A-LiNK) was created by caregivers and psychosocial professionals to support families of children with Inflammatory Bowel Disease (IBD) and Autoimmune Liver Diseases (AILD). This guide offers practical advice, emotional support, and real-life tips for navigating life after diagnosis, managing stress, practicing self-care, and helping your child cope. We encourage caregivers to revisit the resource over time, use the included notes pages, and reach out to their care team with any questions or concerns.
⬇️ Download a 1-page printable handout to easily share the Caregiver Coping Resource with caregivers at your center
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
💚 Participate in our Current Research Opportunities (subject to eligibility)
💙 RSVP to join us at one of our upcoming ICN events
💚 Subscribe to blog updates to stay #InTheLOOP with our IBD stories
💙 Download, use & share our free, co-produced IBD resources
💚 Connect with our welcoming & supportive pediatric IBD community and receive IBD resources, community stories, and ICN updates & opportunities
💙 Donate to ImproveCareNow – we are proud to use every dollar donated to advance our mission!
Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
