ImproveCareNow psychosocial


ICN Research Explained: Is it "all in the bag?" Multidisciplinary perspectives on ostomy surgery in pediatric IBD across the ImproveCareNow network

Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.


A Void...Filled

For so many years I remember being this young girl surrounded by so many people but feeling so alone… different than everyone else. I used to never acknowledge that I had a chronic illness unless I had to. When I would get stomach pain, have frequent need for the restroom, or was unable to do what others were doing, that’s when I felt so different…so alone. I was always the one with the (not typical) belly pain, that couldn’t eat anything, or that kept running to the restroom…always feeling singled out.


ICN Research Explained: Variability of Psychosocial Services Within the ImproveCareNow Learning Health System: Opportunities for Optimization

Why was this study done?

The purpose of this study was to understand the availability of psychosocial services across ImproveCareNow.

There have been calls by ImproveCareNow, medical providers, and young persons living with Inflammatory Bowel Disease and their families for increased access to psychosocial services. Psychosocial services are provided by social workers and psychologists with specialized training and skills to support the unique needs of young people living with Inflammatory Bowel Disease and their families. For example, psychosocial providers can teach coping skills to manage and navigate through everyday stressors that accompany living with Inflammatory Bowel Disease (for example, learning how to swallow pills, or screen for symptoms of depression or anxiety), provide coaching for techniques to tolerate symptom flares during treatment (for example, learning relaxation strategies), and help young people prepare for medical procedures (for example, create a coping plan before scopes). Psychosocial providers can also connect patients and families with important resources in the community and support young persons in gaining more independence in their care as they transition into adulthood (for example, learning how to speak up in a doctor’s visit). Understanding the availability of these psychosocial services helps us know how the psychosocial needs are being met for our young persons living with Inflammatory Bowel Disease and their families.


Medication Roller Coaster

I sit staring at what feels like a mountain of pills, my pillbox barely shutting. I just wish I could be a normal college kid. Taking daily medications sounds so simple and easy, but it’s often one of my biggest challenges. Trying to keep up with medications and even appointments gets very exhausting, especially since I’ve had to do these things from a very young age. I know nothing more than a life filled with pills and appointments. 


ICN Research Explained: Practice Survey - Depression Screening in Pediatric Inflammatory Bowel Disease

Why was this study done?

Depression is the number one health problem in adolescents, and by age 18, 20% of adolescents will experience a major depressive episode. For kids and teens with inflammatory bowel disease, the risk for depression is high. One in three adolescents struggle with some form of depression. Depression is linked to (associated with) difficulty adhering to medication, worsened disease activity, and higher healthcare costs. Yet, little is known about depression screening practices in pediatric IBD care. An improved understanding of current screening practices is an important step toward promoting mental health in pediatrics.


You have just met someone who also has IBD - you are not alone.

I remember feeling so alone in my illness. I was diagnosed with at age six and I grew up alone with this disease I was told I had and would never go away. I was surrounded by so many people but felt so peculiar because I was the only one with this disease. I always wondered to myself, “why doesn’t anyone else have this thing called Crohn’s disease?” and “why am I the only one with it?


Episode 32 of the imPACt podcast - What Patients Need From Providers with SWAP

We are excited to welcome back former PAC co-chair, Dr. Jennie David (now a licensed pediatric IBD psychologist) as a host for this episode of imPACt. During episode 32 we talk about whole person care in IBD and get to ask a psychologist, social worker, and medical provider (nurse practitioner) how they came to work in pediatric IBD and how they learned about the mental health components of IBD.


Episode 27 of the imPACt podcast - Mental Health and IBD Flares

Welcome to the second episode in a 3-podcast series we're doing in collaboration with the ICN SWAP group (SWAP stands for Social Workers & Psychologists). In this episode, you'll hear me (Ryleigh) and my fellow PAC member Avery talking with Lauren Potthoff, PhD - an IBD psychologist at Lurie Children's in Chicago - about mental health during IBD flares.


My goal is to eventually help other teens cope with IBD while also coping with mental issues

I'm Rachel, but go by Rach. I'm a 17-year-old rising senior in high school, and about to start a job at Panera Bread. I was diagnosed with Crohn’s in 2016 at age 13. Most people don't know that I love unicorns!! ♥


Episode 9 of the imPACt podcast - IBD Psychology

It was definitely a fascinating experience making this podcast episode where my fellow PAC member, Maha and I interviewed Dr. Jennie David. I especially enjoyed learning more about her profession and remember thinking that I didn’t even know IBD Psychology was its own subfield.


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