NEW Centralized Guidebook for Caregivers of Children and Adolescents Living with Crohn’s Disease

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The National Alliance for Caregiving, with Support from The Leona M. and Harry B. Helmsley Charitable Trust, Releases a Guidebook Addressing Caregivers’ Needs as They Care for a Child or Adolescent Living with Crohn’s Disease

This Circle of Care Guidebook is meant to serve patients, caregivers, and families on their journeys with Crohn’s disease by offering effective resources that have helped other caregivers in similar situations.

The National Alliance for Caregiving (NAC) has recently developed a new guidebook to address the needs of caregivers as they navigate the many challenges brought on by caring for a child or adolescent with Crohn’s disease, a subset of inflammatory bowel disease (IBD). A 2019 study from the National Alliance for Caregiving—which reported survey feedback from 728 individuals who reported providing unpaid care for someone with IBD—found that IBD has a profound impact on the lives of caregivers and highlighted their unmet needs. Findings from that study inspired the development of this Circle of Care Guidebook for Caregivers of Children and Adolescents Managing Crohn’s Disease, developed with the generous support of The Helmsley Charitable Trust. As the number of children and adolescents diagnosed with Crohn’s disease is growing, there is a corresponding increase in the need for caregiving resources. The guidebook is available at http://www.caregiving.org/guidebooks.

This Circle of Care Guidebook is meant to serve patients, caregivers, and families on their journeys with Crohn’s disease by offering effective resources that have helped other caregivers in similar situations. “Family caregivers of individuals with Crohn’s disease, particularly children and adolescents, experience the ups and downs of the disease right alongside their child,” said C. Grace Whiting, J.D., President and CEO of the National Alliance for Caregiving. “They too, must be equipped with the right tools and resources to help their child manage the disease and improve their overall quality of life. That is why we developed this guidebook to provide a centralized place for caregivers to access the right information and the right resources that will help them on their journey with Crohn’s disease.”

“The Helmsley Charitable Trust is committed to improving the lives of people living with Crohn’s disease today, while investing in research to find a cure,” said Dr. Paul Scholl, Director of Helmsley’s Crohn’s Disease Program. “This compendium of informed guidance and pragmatic resources fills an important need for caregivers of children and adolescents living with Crohn’s disease. We hope that it will help members of this unpaid and underacknowledged workforce to continue to advocate for and support the young patients in their care.”

Among many, the topics addressed in this guidebook include:

  • Everyday tips on caring for a child or adolescent with Crohn’s disease;
  • Understanding Crohn’s disease from a medical perspective;
  • Information on treatment and care coordination;
  • Understanding the cost of care and access;
  • Empowering your child to manage their Crohn’s disease; and
  • Caring for yourself and your family.

There is also a section with a comprehensive list of other online and print resources for caregivers, the child living with Crohn’s disease, and his or her family that are referenced throughout the guidebook.

In the development of this guidebook, the National Alliance for Caregiving held three listening sessions with caregivers of children and adolescents with IBD to understand their experiences and the tools they used to manage their child’s Crohn’s disease. NAC also enlisted the guidance of an advisory committee of IBD specialists, including gastroenterologists, psychologists, social workers, and patient advocates to guide the development of the guidebook, including: Sabina Ali, M.D.; Tina Aswani-Omprakash, MPH candidate; Stephanie Brenner, LCSW; Karen Conlon, LCSW; Helmsley grantee and Founder of Health Advocacy Summit, Sneha Dave; Ellen Falkenheim; Stefan D. Holubar, M.D., MS; Ross M. Maltz, M.D.; and Tiffany Taft, PsyD.

If you or someone you know is a caregiver of a child or adolescent with Crohn’s disease, visit http://www.caregiving.org/guidebooks to learn more and access important resources.

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. NAC 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 significant societal and financial contributions toward maintaining the well-being of those in their care, NAC 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 Helmsley Charitable Trust:
The Leona M. and Harry B. Helmsley Charitable Trust aspires to improve lives by supporting exceptional efforts in the U.S. and around the world in health and select place-based initiatives. Since beginning its active grantmaking in 2008, Helmsley has committed more than $3 billion for a wide range of charitable purposes. Helmsley's Crohn's Disease Program supports impactful ideas and mobilizes a global community committed to improving the lives of Crohn's disease patients while pursuing a cure. For more information on Helmsley and its programs, visit http://helmsleytrust.org.

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Patrice Heinz
@NA4Caregiving
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