Picturing Illness, Making Meaning: A Virtual Photovoice Study of Systemic Lupus Erythematosus Narratives Among Chinese Women.

Background/

Objectives

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease characterized by fluctuating symptoms, long-term medication use, bodily uncertainty, and complex self-management demands. These features can make patients' experiences difficult to narrate, recognize, and integrate into everyday life. This study aimed to explore how Chinese women living with SLE use visual narratives to make sense of illness disruption, treatment burden, identity changes, and relational experience.

Methods

This qualitative study used Virtual Photovoice, an online visual method in which participants generate and discuss photographs about lived experience, with eight Chinese women living with SLE. Data included participant-generated photographs, brief captions, SHOWeD-based written reflections structured around prompts that move from image description to broader reflection, and transcripts from three online Photovoice workshops. The data were analyzed using reflexive thematic analysis within a participatory-informed Virtual Photovoice design, informed by illness narrative theory.

Results

Four themes were developed: Invisible Battlefield, Masks and Boundaries, Anchors of Order, and Longing to Be Seen. Participants used photographs and accompanying accounts to give form to fatigue, pain, and bodily uncertainty; negotiate the boundaries between concealment and disclosure; transform medication routines, dietary practices, and illness-related objects into anchors of order and agency; and contrast embodied relational support with clinical encounters experienced as distant or indicator-centered.

Conclusions

The findings show how visual illness narratives can support meaning-making, self-recognition, and reflection on patient-centered communication among women living with SLE. Virtual Photovoice offers a narrative and participatory-informed approach for understanding psychological, embodied, and relational dimensions of chronic illness that are often difficult to express through routine clinical or everyday language.