Original ArticlesUnderstanding the Experiences of Youth Living With Sickle Cell Disease A Photovoice PilotValenzuela, Jessica M. PhD; Vaughn, Lisa M. PhD; Crosby, Lori E. PsyD; Strong, Heather BA; Kissling, Alexandra BA; Mitchell, Monica J. PhD Author Information Center for Psychological Studies, Nova Southeastern University, Fort Lauderdale, Florida (Dr Valenzuela); and Emergency Medicine (Dr Vaughn and Ms Kissling), and Behavioral Medicine (Dr Crosby, Ms Strong, and Dr Mitchell), Cincinnati Children's Hospital Medical Center, University of Cincinnati, College of Medicine, Cincinnati, Ohio. The authors would like to acknowledge Alexandra Bruck, Demaree Bruck, and Venita Robinson for their assistance with data collection and data entry. The present study was funded by Grant#: U54HL070871, Comprehensive Sickle Cell Center, Project 3: Improving Hydroxyurea Therapy in Sickle Cell Disease (PI: Dr Mitchell), funded by the National Institutes of Health (NIH), National Heart, Lung, and Blood Institute (NHLBI). The project was also supported by the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant 8 UL1 TR000077-04. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. The authors declare no conflict of interest. Correspondence: Jessica M. Valenzuela, PhD, Center for Psychological Studies, Nova Southeastern University, 3301 College Ave., Ft. Lauderdale, FL 33314 ([email protected]). Family & Community Health: April/June 2013 - Volume 36 - Issue 2 - p 97-108 doi: 10.1097/FCH.0b013e318282b2f2 Buy Metrics Abstract A Photovoice pilot was conducted with youth living with sickle cell disease (SCD), in order to further understand their lived experience and examine the acceptability, feasibility, and utility of this method in this population. SCD is an inherited genetic condition whose primary symptom is severe pain. Youth were able to reflect on their experiences with SCD using Photovoice and the adapted SHOWeD method. Parents and youth found Photovoice to be valuable for children and adolescents with SCD. Emerging themes included the impact of SCD, the importance of everyday activities and interests, and the importance of family and support. © 2013 Lippincott Williams & Wilkins, Inc.