In February 2019 our Engagement Team asked the ICN Community to share what information, knowledge and know-how could help others living with IBD, and how best to get those resources into the hands of people who need them. Two weeks ago we shared feedback and resources related to “Information and resources surrounding different facets of IBD.” Today, we're sharing feedback and resources related to "Information and resources to support psychosocial health."

We know there is more work to do, and this is the start of identifying resources that can help our community. If you know of any resources that address the topics shared in this post, please contact us so we can share seamlessly.

Excerpt from The Mental Health Provider Guide

Information and resources to support psychosocial health

Respondents have concerns regarding emotional well-being, including mental health and body image. One person wrote “I . . . think mental health resources are crucial. In an ideal world, each doctor/team would have a mental health specialist that they work with closely. Finding mental health care can be difficult and costly but is so important for positive patient outcomes.” One parent offered that “my daughter is currently in remission. Our goal is to continue on and focus on total body and mind care.” Another person wrote that “resources for parents to address the social/emotional needs of their child after they were diagnosed [would help], considering that we all learned after much suffering the emotional toll the disease has on the person.” Another parent spoke of “body image/mental health support” and “anxiety & IBD”, while another wrote of needing “mindfulness tools to ease anxiety.”

ICN Resources: Body Image & IBDCrohn's & Colitis Storybook, The Mental Health Provider GuideWhy It’s Important to Talk about IBD

Parents and patients also want access to support groups. One person wrote of the need for a “support group for people that have been newly diagnosed” and a parent highlighted the need for a “ready-made group of kids my son’s age so he has someone to talk to.” Another person wrote of the need for “more online groups for kids to get to know each other and share worries and success stories,” while a parent noted the need for a “local support group for parents and patients” alike.

ICN Resource: Join the Patient Advisory Council or Parent Working Group

This post was written by David Hartley, with input from Mary Havens, Chris Keck and Sarah Nocito. It is the second in a multi-post series where the ICN Engagement Team explores the results of their "Content Prioritization Survey" - better known as ImproveCareNow's effort to get the right information into the right people's hands at the right time(s) so they have What is Needed, When it's Needed (#WINWIN). All posts in this series will be tagged with #WINWIN so you can find the series by visiting: 💚💙
Show your support for WINWIN! Here's how:
·       Do you have a resource(s) that addresses the topic(s) discussed in this post? Email us to share: [email protected]
·       Collaborate to create resources that could help fill resource gaps! Email us to get involved: [email protected]


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