Improving Healthcare for Individuals and Families Living with Sickle Cell Disease

DESCRIPTION (provided by applicant): The overall objective of the proposed small conference is to improve the healthcare experience of individuals with SCD in North Carolina. A second objective is to improve the health and quality of life of persons living with SCD in North Carolina. A final objective is to increase the number of nurses trained as sickle cell experts in North Carolina. The proposed two-day conference will target nurses (primary target), nursing students, and families with SCD, and provide comprehensive knowledge of the complexity of sickle cell disease (SCD) in children and adults. The conference proposes a new model in which to deliver education by delivering education to nurses, patients and families living with SCD, in the same educational venue. The conference will also increase the capacity to train nurses beyond those that attend the conference by increasing the number of nurses trained as SCD Champions, a novel component of the proposed conference. A two day conference will be offered at the Duke University School of Nursing (DUSON), each day with a different focus. The conference will cover a broad range of topics related to SCD including genetics, pathophysiology, medical, and psychosocial complications of sickle cell disease in children and adults. Day one will focus on the care of the adult and day two will focus on the care of the child and adolescent with SCD, and provide specific education to patients and families living with SCD. In addition to marketing to nurses and nursing students, we will specifically market Day 2 of the conference to the community and encourage attendance by individuals with SCD, and family members of children with SCD. By providing both core and breakout sessions on both days, we will be able to address educational needs of providers, patients, and families. Our goal is to include an opportunity for interaction and communication among healthcare providers and individuals and families experiencing SCD. Finally, we will measure healthcare provider attitudes towards persons with SCD, and their knowledge of SCD prior to the conference, at the end of the conference and following the conference.