Background/Purpose:

Lupus through the Lens is a photography project for people with lupus to capture, in pictures, what it means to live with lupus. Created by the S.L.E. Lupus Foundation, it borrows from photovoice, a socially-engaged photography technique based on community-based participatory research and visual narrative inquiry. To our knowledge, photovoice has not been used within the lupus community. The Foundation’s goals for the program were: 1. create public awareness about the shared lived experience of lupus since it is often misunderstood by both lay people and healthcare professionals, 2. aid participants in coping with their illness, and 3. aid viewers with lupus to feel less isolated and more validated in their experience through identification with photos and respective captions. 

Methods:

This was a 7-week workshop that met over 4 months with 6 participants, all with lupus. Participants were integral in developing project content: through group discussions, they chose the program title and photos to include on the project website; they developed captions, which further defined the meaning of their work. Participants were loaned cameras, and a participant with photography experience gave lessons on camera use and photography techniques. To create public awareness, photos were displayed on a dedicated website and via social media.

Results:

Of 803 photos, 53 were selected for the project website. The Foundation’s goals were met. Awareness is measured by website traffic; within its first 6-weeks, there were 26,000 views. Participants were aided in coping with their illness, as reported in their final evaluation indicated by a sense of pride, camaraderie, socialization, and self-expression; a new way to share lupus with others; and a deeper understanding of the personal impact of one’s own lupus. Based on responses on the project website, Facebook, email and in-person communication, viewers shared that the project gave their experience a voice and they related to the photos on an emotional level.

Conclusion:

The project resulted in powerful images and new ways to convey what it is like to live with lupus. The participants themselves defined it as a success. While the program is time-intensive, it is an inexpensive program that can be replicated by other lupus groups. The Foundation will continue in-person workshops, and the project will also grow through online submissions. Based on participants’ feedback, the program has the potential to help reduce feelings of isolation and depression, and increase self-esteem and a sense of self-efficacy. More data are needed to confirm participants’ reported outcomes. In the future, variables like self-efficacy, self-esteem, depression, and quality of life will be incorporated into the evaluation.