Families Caring for Individuals with Crohn's Disease and Ulcerative Colitis to be Focus of Caregiving Study

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The National Alliance for Caregiving, Crohn’s and Colitis Foundation, and ImproveCareNow Partner to Understand the Impact of Inflammatory Bowel Diseases (IBD) on Caregivers

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“IBD caregivers are an integral component of our national health and social care systems,” said C. Grace Whiting, President and CEO of the National Alliance for Caregiving. Through this survey, we hope to capture the power behind these unpaid friend and family caregivers.”

The National Alliance for Caregiving in partnership with the Crohn’s & Colitis Foundation and ImproveCareNow is launching a first-of-its-kind survey of inflammatory bowel diseases (IBD) caregivers. The survey, which goes live today, is seeking feedback from family caregivers of children and adults living with Crohn’s disease or ulcerative colitis, the two major types of IBD. The survey can be completed by visiting IBD.CAREGIVER.SURVEY.

Historically, much of the focus on caregiving has been on the aging population in America. However, policymakers are beginning to take notice of the impact on the volunteer friends and family who provide care for individuals of all ages suffering from other diseases and conditions, including Crohn’s disease and ulcerative colitis.

Crohn’s disease and ulcerative colitis affects as many as 3 million Americans. They are painful, medically incurable diseases that attack the digestive system. Crohn's disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss. Many patients require numerous hospitalizations and surgery. Most people develop the diseases between the ages of 15 and 35; however, the incidence is increasing in children.

“Because of the debilitating nature of these incurable diseases, caregivers are critical in helping patients cope with living with IBD,” said Laura D Wingate, Senior Vice President, Education, Support, & Advocacy of the Crohn’s & Colitis Foundation. “Family caregivers provide more than just physical assistance - their role in IBD patient care is immense. This survey will provide us with insights into the traditional and nontraditional roles of caregivers in IBD and the affect their loved one’s disease has on their life.”

“Caregivers play a key role in the lives of patients living with IBD and we hope to learn more about how they provide day-to-day support to their loved ones,” said Steve Steiner, M.D., ImproveCareNow Research Committee Co-Chair. “The stress and emotional toll put on a caregiver can greatly impact the emotional wellbeing and health outcomes of children with IBD. We are excited to explore the challenges and contributions of caregivers in the IBD community.”

“IBD caregivers are an integral component of our national health and social care systems,” said C. Grace Whiting, J.D., President and CEO of the National Alliance for Caregiving. “Whether they are attending doctor appointments, staying abreast of research advances, navigating insurance, or much more, they provide critical physical and emotional support to the people for whom they care. Through this survey, we hope to capture the power behind these unpaid friend and family caregivers and to articulate what they are doing so that they can serve as a model for caregivers in other communities.”

The study will include an independent advisory committee to review the survey questionnaire and data before its release. Researchers at New Mexico State University will administer the survey and conduct the data analysis, in partnership with the National Alliance for Caregiving, Crohn’s & Colitis Foundation, and Improve Care Now.

Patient advocacy communities are encouraged to invite IBD caregivers to participate in the online survey. After fielding, the data will be collected, cleaned, and aggregated into the final report, which will be released in a Capitol Hill briefing for Members of Congress, and distributed nationally and internationally.

The research is made possible through generous grant funding from the David R. Clare and Margaret C. Clare Foundation.


About the National Alliance for Caregiving
Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance supports a network of more than 80 state and local caregiving coalitions and serves as Secretariat for the International Alliance of Carer Organizations (IACO). Learn more at http://www.caregiving.org.

About Crohn’s and Colitis Foundation
The Crohn's & Colitis Foundation is the largest non-profit, voluntary, health organization dedicated to finding cures for inflammatory bowel diseases (IBD). The Foundation’s mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults who are affected by these diseases. The Foundation works to fulfill its mission by funding research; providing educational resources for patients and their families, medical professionals, and the public; and furnishing supportive services for those afflicted with IBD. For more information visit http://www.crohnscolitisfoundation.org, call 888-694-8872, or email info@crohnscolitisfoundation.org.

About ImproveCareNow
ImproveCareNow (ICN) is a Learning Health Network dedicated to transforming care, health and costs for all children and youth with Crohn’s disease and ulcerative colitis by building a sustainable collaborative chronic care network. ICN enables parents, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. For more information visit http://www.improvecarenow.org or email info@improvecarenow.org.

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C. Grace Whiting

Rebecca Kaplan
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