Posted by ImproveCareNowâ„¢ on May 15, 2025
When I was diagnosed with Crohn’s disease at 12 years old, I was inundated with thoughts and feelings about my new diagnosis – what did it mean, why did I need to take medicine, what did a chronic illness mean for my future, how was I going to learn to swallow pills? I was – understandably and developmentally-appropriately – focused on my own coping with a new illness as a young person. I remember feeling frustrated and impatient with my very supportive parents when they prompted me to take my new medication; I cried and was obstinate often in those early weeks and months, with my parents’ support unwavering and steadfast. My mom was my advocate and champion, she always made sure my voice was heard during medical visits. My dad helped me to feel less alone, including a sincere offer to also have an NG (nasogastric) tube placed when we considered enteral therapy.
Over the >20 years since my IBD diagnosis, I trained to become a pediatric IBD psychologist and began to notice the disease’s impact on the caregivers and the family system. A few years ago, I was in a medical clinic visit with a family whose two young children live with Very Early-Onset Inflammatory Bowel Disease (VEO-IBD) with the parents normatively having thoughts and feelings about their children’s healthcare. I recall wishing that I had a caregiver-focused coping resource to give to family to help them feel less alone, but no such resource existed. It made me think of my parents and all of the heavy thoughts and feelings that they experienced in private coping with their child’s diagnosis.
I recall wishing that I had a caregiver-focused coping resource to give to family to help them feel less alone, but no such resource existed.
One of the many reasons that I love the ImproveCareNow (ICN) network is the opportunity to create resources that are needed in the pediatric IBD community through collaboration and quality improvement (QI) methodology. And so, I set out to be a part of creating a caregiver-focused coping resource so that one day I could give a family a much-needed resource. As the co-lead of the ICN Social Workers and Psychologists (SWAP) group, I helped to gather a team of psychosocial professionals and caregivers from the ICN Parent/Family Advisory Council and the Autoimmune Liver Disease Network for Kids (A-LiNK). Everyone was dedicated to building a caregiver-focused resource, with palpable excitement about what this could mean for future families.
I set out to be a part of creating a caregiver-focused coping resource so that one day I could give a family a much-needed resource.
Over nearly two years, our team worked hard to plan, write, and create a caregiver coping resource for caregivers of pediatric IBD and/or Autoimmune Liver Disease (AILD). It was deeply exciting to see this coproduced resource come together, marrying the lived experience of caregivers with evidence-based information and resources from psychosocial clinicians. We presented on this novel caregiver and healthcare professional resource collaboration at an ICN in-person conference and wrote a manuscript currently under review describing this project, with the hopes that we can demonstrate to the larger academic community that collaboration with caregivers is feasible and meaningful.
It was deeply exciting to see this coproduced resource come together, marrying the lived experience of caregivers with evidence-based information and resources from psychosocial clinicians.
I am so thrilled and humbled that our Caregiver Coping Resource is ready to share – I hope this resource brings caregivers a source of normalization, support, and hope. The resource is like a choose-your-own-adventure book that can be used at any point along the health journey – this allows each caregiver to read the part of the resource that is most relevant to them at that moment in their child’s care. There is much, much more to do in the caregiver coping space and the Caregiver Coping Resource is an important first step in formalizing support for our caregivers in the ICN and A-LiNK communities.
Caregivers who have children with IBD and/or AILD are incredible humans who – just like my parents did – deserve support in the family’s experiences of chronic illness. I am so grateful for everything my parents did (and continue to do) to support me in my disease and life, and sincerely hope that being a part of the Caregiver Coping Resource development is a way to say thank you and to help improve the experiences of other caregivers.
(Mom and Dad, thank you for everything – this one’s for you both!)