Posted by Sarah Nocito on September 20, 2018
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 Disease (IBD) caregivers. The survey, which is being conducted by researchers from Crimson Research at New Mexico State University, is seeking feedback from family caregivers of children and adults living with Crohn's disease or ulcerative colitis, the two major types of IBD. "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," explains C. Grace Whiting, President and CEO of the National Alliance for Caregiving.
“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.”
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 ImproveCareNow.
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.
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Read the FULL September 13, 2018 press release >>
About ImproveCareNow
ImproveCareNow is a Learning Health Network dedicated to transforming care, health and costs for all children and youth with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network. We are enabling patients, families, clinicians and researchers to work together in a learning health care system to accelerate innovation, discovery and the application of new knowledge. We invite everyone interested in getting kids with IBD better right now to join us at improvecarenow.org.
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 the Crohn’s & Colitis Foundation