IBD Caregiving

Autoimmune Caregiving: Focus on IBD

NAC, in partnership with the Crohn’s & Colitis Foundation and ImproveCareNow, is proud to release the first national report, to our knowledge, on caregiving of individuals with inflammatory bowel disease. Inflammatory bowel disease (IBD) is an umbrella term that describes chronic inflammation of the digestive tract. Riding the Roller Coaster of Inflammatory Bowel Disease: A National Study of Caregivers of Individuals with Crohn’s Disease or Ulcerative Colitis focuses on caregiving for the more than three million Americans affected by the two most common forms of IBD.

Researchers from Crimson Research at New Mexico State University (NMSU) conducted the research, with grant funding provided by the David R. Clare and Margaret C. Clare Foundation. In addition to demographic data on who is receiving care, the caring tasks provided and the amount of time spent providing care, several key findings emerged from this report, including the high percentages of caregivers working full-time or part-time while providing care, as well as the amount of time caregivers miss from work due to caregiving responsibilities.

It was clear from the study that caregivers needed support, with the report providing insight on who provides that support and caregivers’ perception of their capacity to provide care for the condition. The report also includes policy recommendations and next steps that can be taken in order to improve support for IBD caregivers and their families.

National Report & Related Materials

National Report on Caregivers of People with Inflammatory Bowel Disease
Published in September 2019, the full study reports survey feedback from 728 individuals who reported providing unpaid care for someone with IBD. Survey questions related to demographics, caregiving situation, tasks, access to treatment and services, the caregiver’s wellbeing, and their time for outside activities.

Portrait of an IBD Caregiver
This infographic paints a portrait of those caring for individuals with IBD.

Do you care for someone who has been diagnosed with Ulcerative Colitis or Crohn’s Disease?

People who care for another person, also called caregivers or care partners, often experience stress related to caregiving. If you are in this situation, know that you are not alone. A recent study of people caring for a person with Inflammatory Bowel Disease (IBD) found that…

A Professionals Guide to Supporting, Engaging, and  Protecting IBD Patients and Caregivers

In September of 2019, the National Alliance for Caregiving, the Crohn’s & Colitis Foundation, and ImproveCareNow released findings from the first-ever National Study on Caregivers of People with Crohn’s Disease or Ulcerative Colitis. The study findings highlighted unmet needs of family caregivers who are caring for patients living with inflammatory bowel disease (IBD).

Watch the National Report Release

Resources for Families Managing IBD

ImproveCareNow: Patients and Parents

“ImproveCareNow care teams use proven tools and techniques to better track and manage your Crohn’s disease or ulcerative colitis. We know that when patients and parents are involved too, kids with IBD start feeling better quickly and are able to get back to doing the things that they enjoy.”

Crohn’s and Colitis Foundation: IBD Help Center

“Do you have questions about Crohn’s disease or ulcerative colitis? The Irwin M. and Suzanne R. Rosenthal IBD Resource Center, also known as the IBD Help Center, provides information and resources to patients, caregivers, and healthcare providers about inflammatory bowel disease (IBD). The program helps individuals and their caregivers to find specific resources, offers referral to other organizations, and helps to educate families on health insurance coverage.” 

American Autoimmune and Related Disorders Association (AARDA) 

“The American Autoimmune Related Diseases Association is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, research, and patient services in an effective, ethical, and efficient manner.”

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