Lupus & antiphospholipid syndrome
Using photovoice to investigate patient experiences of lupus nephritis in Canada
Authors' conclusion
Participants reported a substantial psychosocial burden associated with altered life trajectories, the dual burden of LN and the associated medication journey, and the conflicting role of the physical environment.
Study context
- Population
- Adults ≥18 years with biopsy-proven ISN/RPS Class III, IV or V lupus nephritis (LN) from a Canadian lupus cohort92.3% female
- Participants
- 13 adults
- Outcome
- Photovoice themes of lived experience of LN
Methodological detailsphotovoice (visual-narrative participatory research method), focus groups, purposeful recruitment
- Photovoice (visual-narrative participatory research method)
- Focus groups
- Purposeful recruitment
Main finding
As reported in the abstract
- Photos shared per participant, mean (SD)
- 4.2 (0.9)
- Photos shared, total
- 54
- Photos depicting activities/settings that contribute to well-being
- 15
- Photos depicting the participants themselves
- 13
- Photos depicting healthcare experiences
- 10
- Photos depicting home
- 4
- Photos depicting community
- 2
- Photos depicting friends
- 2
- Photos depicting work
- 2
- Photos depicting other challenges
- 6
- Participants describing physical and psychosocial impacts of living with LN
- All
- Participants mentioning activities/settings that contribute to well-being (eg, time in natural environments)
- 12
- Participants highlighting medication side effects
- ten
- Participants highlighting medication-related financial challenges
- five
Original publication
Using photovoice to investigate patient experiences of lupus nephritis in Canada. Lupus Sci Med. Published 7 November 2024. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →