Using Photovoice to Explore the Unique Life Perspectives of Youth With Sickle Cell Disease

Abstract

Sickle cell disease (SCD) has been associated with multiple physical and psychosocial challenges but less is known about the experience of living with the disease, particularly from the perspective of children/adolescents. Photovoice uses photography to access the experiences of individuals living with a disease and provides them with a voice for expression. It provides a unique approach to exploring the perspective of children/adolescents with SCD. This pilot study examines the perspective of children/adolescents with SCD using photovoice, both to gain understanding of the perspective of these patients and the utility of the research method with this population. Twelve participants with SCD between the ages of 6 and 14 years participated in this study. Participants took photographs during camp and completed qualitative interviews afterward to explore their perspective on life with SCD and experience with the photovoice method. Main themes derived from content analysis of the qualitative interviews included the following: (a) importance of friends, (b) controlling symptoms, and (c) importance of camp. This study demonstrated that (a) a camp can provide a beneficial social outlet with peers with SCD, (b) children/adolescents with SCD are able to manage their complex symptoms at a young age, and (c) photovoice is a useful methodology for children/adolescents with SCD and potentially other chronic illnesses.