Chronic Disease / Pain Management

As part of an effort to increase the participation of South Sudanese in the peace process and now the civic life of their new nation, the Sudan Radio Service provides access to balanced and useful information through radio-based education, news, and entertainment programs presented by local presenters in nine languages. Independent research found that Sudan Radio Service has approximately one million listeners.

Sudan Radio Service also builds the capacity of Sudanese journalists through its Certificate in Broadcast Journalism program and through on-the-job training.

Chronic Care Community Corps (4C) believes that communities hold an important solution to the challenges faced by families caring for elder loved ones with chronic or life-threatening illness. 4C’s mission 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.

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?

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.

Working in the pediatric intensive care units (PICUs) of six geographically and demographically diverse children´s hospitals, this study will examine end-of-life care through medical records and interviews with key stakeholders—the child´s parents, the child´s primary nurse, the nurse who was present at the bedside at the child´s death, the attending intensivist who directed the child´s care, and a clinician besides the physicians and the nurses who provided psychosocial support to the family (e.g., social worker, psychologist, child life specialist, or chaplain).