Document Type
Article
Publication Date
2025
Publisher
Oxford University Press
Source Publication
Journal of Sickle Cell Disease
Source ISSN
3029-0473
Original Item ID
DOI: 10.1093/jscdis/yoaf027
Abstract
Objective
To explore the lives of adults living with sickle cell disease (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 four 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.
Conclusions
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.
Recommended Citation
Clayton-Jones, Dora L.; Haglund, Kristin; Bekhet, Abir K.; Beltran, Emily; Goodson, Dominique; Nwosu, Chinonyelum; Akindele, Leroy; Sikes, Sharonda; Field, Joshua; Carroll, Yvonne M.; Peacock, Ethlean; Richardson, Sidnei; Shropshire, Terrea; Strack, Robert W.; Jones, Dorian X.; and Ong, Lee Za, "A Virtual Photovoice Project to Describe Adult Perspectives on Living with Sickle Cell Disease" (2025). College of Education Faculty Research and Publications. 630.
https://epublications.marquette.edu/edu_fac/630
Comments
Accepted version. Journal of Sickle Cell Disease, Vol. 2, No. 1 (2025). DOI. © 2025 Oxford University Press. Used with permission.