The HOPE Resource Center: Three Decades of Giving Back to Move Forward

Monday, 18 November 2013: 2:25 PM

Kathleen S. Ruccione, RN, MPH, BS
Division of Hematology-Oncology, Children's Hospital Los Angeles/University of Southern California, Los Angeles, CA

Learning Objective 1: Identify key challenges and strategies in developing/sustaining a multi-modal patient/family health education program

Learning Objective 2: Recognize opportunities for adapting, implementing, and evaluating patient/family health education interventions to advance the state of the science

Childhood cancer places significant demands on patients and their families to learn self-management of medications/devices, recognize signs/symptoms requiring prompt action, master effective ways of coping with disease- and treatment-related stresses, as well as adopt and maintain health-enhancing behaviors. Patient education – which has evolved from an emphasis on learners as passive and dependent to participatory health education, with a focus on patient/family autonomy and empowerment, health promotion and disease prevention – is recognized as an essential nursing competency.  However, it can be difficult to operationalize in practice. In the majority of childhood cancer treatment settings this education is provided mostly through ad hoc methods, and although learning resource centers are increasingly available, they are often limited to a library of informational materials and/or self-service computers with Internet access.  Few programs offer structured, multi-modal education informed by evidence and led by nursing. The HOPE Resource Center (HRC) at Children’s Hospital Los Angeles (CHLA) is a comprehensive patient/health education program conceived and sustained by nurse-health educator partnerships for 30+ years. The HRC model has resulted in the provision of linguistically- and culturally-appropriate expert health education and infomediation services; designed/disseminated print, video, and web-based resources nationally and internationally; and is positioned for continued innovation through planned research. This presentation will highlight: (1) empiric evidence regarding effective childhood cancer-related patient/family education, (2) key innovations emanating from the HRC model, (3) considerations in the model’s adaptation/dissemination, and (4) implications for clinical practice and research. By engaging nurses at every level, including bedside nurses, advanced practice nurses, nurse managers and directors, the HRC model taps the depth and breadth of pediatric oncology nursing expertise to engage in the development and implementation of patient/family health education.  This model could be replicated in other settings where practical, efficient, and engaging approaches to patient/family health education are needed.