Providing a sense of hope, knowledge, ideas, emotional/mental health support for other caregivers

The summer of my son’s diagnosis was one our family will never forget. While backpacking in California, my then 16-year-old son developed severe, life-threatening diarrhea. This would ultimately lead to a diagnosis of Inflammatory Bowel Disease (IBD) and within 18 months my son would have a total colectomy. We ended up at an ImproveCareNow care center - Children’s Healthcare of Atlanta/GI Care for Kids – and the rest is history as they say. Except that “history” has been long, overwhelming, saddening, frustrating, hopeful, and inspiring, full of questions.

Looking back over the journal I kept during my son’s diagnosis, I am reminded of what was missing - information for the caregiver.

Seven years later, I am grateful to have found and become involved in ICN. I have shared my family’s journey to bring knowledge, our lived experience, and support to others. I have served as a co-lead of the ICN Parent/Family Advisory Council (PFAC) with my esteemed friends Ildiko and a national network of extraordinary parent partners, past and present.

By finding each other and volunteering together, we, as caregivers, realized our shared desire to produce a resource for caregivers. We planted a seed with the ICN Social Workers and Psychologists (SWAP) group two and half years ago. I am so overjoyed to share that what started as a seed has now grown into the Caregiver Coping Resource for parents and caregivers of children with IBD and/or Autoimmune Liver Disease (AILD).

I get emotional thinking of this extraordinary project. My desire is that this resource will provide a sense of hope, knowledge, ideas, emotional/mental health support for other caregivers. No matter what stage of the journey they are in, this resource will help families navigate a complex diagnosis in partnership with their clinicians and families.

I get emotional thinking of this extraordinary project. My desire is that this resource will provide a sense of hope, knowledge, ideas, emotional/mental health support for other caregivers. No matter what stage of the journey they are in, this resource will help families navigate a complex diagnosis in partnership with their clinicians and families. 

I feel incredibly grateful to have been part of a passionate and diverse team of parents, psychologists, and social workers - Brenda, Chris, Maria, Tori, Ildiko, Erin, Jane, Jennie, Tina, Hannah, Noelle - who collaborated over the past two years to create this caregiver-focused resource from our shared journeys, knowledge, education, and experiences. Here is what Maria and Brenda have to say about this experience ⬇️

Creating the caregiver coping toolkit is a collective effort that encapsulates the heart and dedication of a wonderful group of parents and medical professionals. This toolkit is a reflection of our shared hard lessons, quiet victories, and deep love that have shaped our journey. Our greatest hope is that it becomes a guiding light for other families, reminding them they're not alone and helping them find their path forward, one step at a time. ~ Maria, Nemours Children’s Health - Florida

Participating in the caregiver’s resource was such a full circle experience. I was able to work with amazing individuals who truly understood the journey of a caregiver, who collaborated to develop an inclusive resource that we all wished was available when we all took on the caregiver role. ~ Brenda, PGNA

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.