Using photovoice to investigate patient experiences of lupus nephritis in Canada.

Objective: Lupus nephritis (LN) is a major cause of morbidity and mortality, affecting up to 60% of patients with systemic lupus erythematosus (SLE). The perspectives of patients with SLE have been explored; however, little is known of the lived experiences of patients with LN.
Methods: Patients aged ≥18 years with biopsy-proven pure or mixed International Society of Nephrology/Renal Pathology Society Class III, IV or V LN were purposefully recruited from a Canadian lupus cohort to participate in a photovoice (visual-narrative participatory research method) exercise. Participants took photos of what LN means to them, impacts on daily life and factors impacting LN management. Photos were shared and discussed in focus groups.
Results: 13 individuals with LN participated (92.3% were female; mean (SD) age was 41.7 (14.0) years). The mean (SD) number of photos shared per participant was 4.2 (0.9). Photos (n=54) depicted activities/settings that contribute to well-being (n=15), the participants themselves (n=13), healthcare experiences (n=10), home (n=4), community (n=2), friends (n=2), work (n=2) and other challenges (n=6). All participants described physical and psychosocial impacts of living with LN. Although 12 mentioned activities/settings that contribute to well-being (eg, time in natural environments), participants were consistently reminded of limitations imposed by LN due to physical symptoms, challenges presented by the physical environment and the altered life trajectories experienced. Participants discussed the dual burden of LN and the associated medication journey; side effects and medication-related financial challenges were highlighted by ten and five participants, respectively.
Conclusions: 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. The need for flexibility (ie, from employers, themselves) is an essential component of navigating altered life trajectories.
Competing Interests: Competing interests: FSC and SJE have no conflicts of interest to disclose. MRWB has received consulting fees from AbbVie, AstraZeneca, Janssen, GSK and Sanofi-Genzyme. KC has received consulting fees from Novartis and speaker fees from Alexion. SG and AB are employees of GSK. AB also holds stock/shares in GSK. AEC has received grant/research support from GSK, and consulting fees/honoraria from AstraZeneca, Bristol Myers Squibb, GSK, Otsuka and Roche; and holds The Arthritis Society Chair in Rheumatic Diseases at the University of Calgary.
(© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)