In this project, adolescents with cystic fibrosis (CF) discuss their experiences with their disease and treatment regimen through the creation and sharing of illness and self-management video portraits.
Each video assignment will ask teens to:
Show and tell how they handle some key aspect of self-management (e.g., taking enzymes at school)
Explore how they handle key self-management skills
Develop a short narrative reflection on the impact that self-management issues have on their quality of life, goals for the future, and relationship with their parents.
Communities hold an important solution to the challenges faced by families caring for elder loved ones with chronic or life-threatening illness. The mission of Chronic Care Community Corps (4C) is to build the capacity of our communities to provide meaningful support to family caregivers.
By capturing the wisdom of past, present, and future caregivers in community-based seminars along with complementary Web-based learning, 4C equips seminar participants with tools, strategies, and information to proactively support families caring for a loved one.
PainLink was a virtual community of health professionals working in institutions committed to alleviating pain. An initiative of Education Development Center, Inc., PainLink was established in 1995 with funding from The Mayday Fund of New York City, which funded PainLink through 1999. From 1995 through 2001, EDC’s PainLink staff worked with staff in over 60 hospitals and nursing homes.
CAE edited and managed this international peer-reviewed journal, which was an initiative of the Robert Wood Johnson Foundation’s Last Acts Task Force on Institutional Innovation. The journal reached more than 8,000 health care providers each month and featured thematic issues that highlighted promising practices and expert commentary.
The Initiative for Pediatric Palliative Care (IPPC) was launched in 1998 as a research, quality improvement, and education effort aimed at enhancing family-centered care for children living with life-threatening conditions. Using a retreat format, IPPC addresses the knowledge, attitudes, and skills that health care professionals need to better serve children and their families.
HHD Global Programs (of EDC’s Health and Human Development Programs) is working with the American Cancer Society in the worldwide fight against cancer by developing modules for a signature international curriculum that has already reached 245 scholars from 62 countries.
EDC has received $1.5 million in start-up funding to improve care for children with life-threatening conditions and their families. The initiative, Enhancing Family-Centered Care for Children Living with Life Threatening Conditions, coincides with the recent release of an Institute of Medicine (IOM) report on end-of-life cancer care, which calls for a stronger focus on relieving children’s pain and suffering, as well as physician education and family support. Seven hospitals are participating in the initiative as pilot sites.