Chronic Disease / Pain Management

As part of an effort to increase the participation of southern Sudanese in the peace process, the Sudan Radio Service provides access to balanced and useful information through radio-based education, news, and entertainment programs presented by local presenters in ten local languages.

In an effort to fight cancer, EDC is working with the American Cancer Society’s corporate partners to develop assessments and training materials that will benefit employees and their families. The messages and services they will receive, such as tobacco cessation and nutrition counseling, aim to help them manage or prevent chronic or terminal diseases like cancer.

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.

Initiated in collaboration with Children’s Hospital Boston, PERCS is an educational program for house staff, medical residents, nurses, and allied health professionals focused on improving communication and relationship-building skills with children and families. The one-day workshop includes interviewing of simulated patients, video feedback, personal and professional debriefing, and didactic presentations in pediatric palliative care and communication principles. This workshop continues to be offered on a monthly basis, and has been attended by over 150 practitioners.

The identification of a genetic disorder or risk raises the question of risk for family members and with it concerns about rights and obligations in regard to disclosure of genetic risk information. This project uses a vignette survey method administered to health care providers (general internists, nurse practitioners, genetic counselors) and health care consumers (naive consumers and consumers experienced with a genetic disorder in their family) to examine: What are the expectations of both patients and health care providers in regard to sharing medical information?

This project organizes retreats that explore ways to integrate pediatric palliative care education into health care settings. Building on the “Family as Educators” component of EDC’s Initiative for Pediatric Palliative Care (IPPC) program, bereaved parents and parents whose children are faced with chronic health conditions participate in the retreats as co-teachers and co-learners alongside the health care professionals.

This study gathers empirical data on the experiences of cystic fibrosis (CF) patients, their families, and caregivers during the final years of life. The specific aim is to understand the quality of life and the social and logistical needs of CF patients and their families, and to understand how these factors may differ depending on the patient’s end-of-life trajectory.

In this project adolescents with cystic fibrosis (CF) will discuss their experiences with their disease and treatment regimen through the creation and sharing of illness and self-management video portraits.

Gems of Care (GOC) is a national program dedicated to improving the continuity and coordination of health care and social services for children with life-threatening conditions and their families. GOC will achieve improved integration of services by facilitating networking and dissemination of expertise between hospitals and community-based organizations, both within identified geographical regions and throughout the country.