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.
Authors
- Yvonne Carroll (ORCID: https://orcid.org/0000-0002-9154-6935)
- Kristin Haglund (ORCID: https://orcid.org/0000-0002-2786-5499)
- Robert W. Strack (ORCID: https://orcid.org/0000-0003-1528-3202)
- Joshua J Field (ORCID: https://orcid.org/0009-0005-6640-1848)
- Chinonyelum Nwosu (ORCID: https://orcid.org/0000-0003-1079-7829)
- Abir K. Bekhet (ORCID: https://orcid.org/0000-0001-7174-7054)
- Lee Za Ong (ORCID: https://orcid.org/0000-0002-2102-1199)
- Dora Clayton-Jones (ORCID: https://orcid.org/0000-0003-2092-8909)
- Deirdre E. Jones
- Dominique Goodson
- Ethleen Peacock
- Samantha Richardson
- Terrea Shropshire
- Emily Beltran
- Leroy Akindele
- Sharonda Sikes
Institutions
- Marquette University (US)
- Dallas County Community College District (US)
- Froedtert Hospital (US)
- St. Jude Children's Research Hospital (US)
- University of Wisconsin–Madison (US)
- Johns Hopkins University (US)
- Savannah State University (US)
- University of North Carolina at Greensboro (US)
- Johns Hopkins Medicine (US)
- Southwest Tennessee Community College (US)
- Community Care (US)
- United Community Center (US)
- East Orange VA Medical Center (US)
- Johns Hopkins Hospital (US)
- University of Memphis (US)
Publication Details
- Journal
- Journal of sickle cell disease.
- Published
- 2025-01-01
- DOI
- https://doi.org/10.1093/jscdis/yoaf027
- Primary Topic
- Ideological and Political Education
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Marquette University