A virtual photovoice project to describe adult perspectives on living with SCD

Abstract Objective To explore the lives of adults living with SCD through a novel virtual photovoice method. Methods Using a community-based participatory action framework, participants took photographs to document and describe their experiences. Participants met virtually over 4 months and took photographs to reflect their selected topics, provide descriptive captions, and discuss selected photographs using the SHOWeD method. Participants narrowed down their photos and identified themes. The culmination of this work was displayed through a live virtual presentation of participants’ photos accompanied by a narration. Results Six themes were identified to include being a sickle cell warrior, challenges, support, distractions, positives, and call to action. Having a voice throughout the project was valued by participants. Conclusion The photovoice project provided participants with an opportunity to share their perspectives living with SCD. Learning about their unique experiences can set the stage for the development of interventions to improve their overall quality of life.